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

It Doesn't Know the Words

11:46 PM
It has been a long time since I wrote anything on here for two main reasons. One reason is that things have been pretty boring, and boring can be a tremendous blessing. Considering how un-boring things were last year at this time I am quite content with any stretches of boring that God chooses to send my way. The other reason is that even though it has been boring I have been dealing with some of the tougher emotional aspects of this journey and illness. When I am having a harder time processing something or dealing with it, it is my nature to withdraw in order to protect those around me from being impacted by the illness that is already impacting and changing my life. Plus I detest feeling sorry for myself or whining, and yet that is how just about every thing I have tried to write has sounded to me lately.
So anyway, today I had an echocardiogram done because I have been experiencing swelling on my legs especially but also generalized swelling/edema of my body. Also, without informing me, my doctor apparently heard a heart murmur when he listened to my heart 2 weeks ago. I am so appreciating his sharing that tidbit of information with me. The good news is that the heart muscle is in good condition, it is the appropriate size, and overall function seems appropriate - these are a preliminary "wet read" and the cardiologist still must review the images. The bad news is that I have developed two leaky heart valves sometime between September 2008 when I was last seen by a cardiologist and now. According to the tech, they are not leaking enough to be a significant problem but they are the most likely cause of the murmur the doctor heard. Apparently my heart does not know the words to the song so it just murmurs in time to the music. Sounds about right since I am completely musically tone deaf. I find it an odd "coincidence" that these valves started leaking at the same time I presented with all of my other major symptoms. I wonder if this will be another piece in the puzzle.
I am really tired, but I wanted to record this as much for my own records as for anyone who chooses to read it. I promise to write a more interesting, more "me" entry this week!
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In My Dreams

10:57 PM


In my dreams I am transported back 12 months ago, back before my muscles began to weaken and become controlled by spasticity, back before the dysphagia, back before the AFOs and contractures in my toes, back before the forearm crutches to drag myself in lurching steps across a small room, back before Nessa to wheel my way through the world.


 
 
In my dreams I am transported to the time when I could move without thought, when I was not dependent upon anyone to meet the needs in my life, when I was the healthiest I had ever been in my entire life and able to push the boundaries and limits of my self.



In my dreams I am still able to grab my backpack and go hiking through the hills of Virginia at the spur of the moment. I scramble up hillsides clinging to tree roots, I climb along rocky riversides, and I feel the sure and certain strength in my arms and legs.



In my dreams I run because I can. I twirl in circles under the light of a starlight sky and fall laughing onto summer sweet grass. I chase fireflies, and my little ones, my precious students, whose laughter will forever be the most beautiful sound that ever exists on earth. I can scoop my niece up in my arms and spin her around, holding her tightly in a hug.




In my dreams none of the past year has happened. In my dreams I am another person, in another time, in another place. Not necessarily a better person, but a different person. I am thankful for the escape of my dreams, but I am also thankful when I open my eyes each morning.

** The photos are from the last hike that I took prior to developing what has been tentatively diagnosed as Progressive Spastic Paraparesis/Paraplegia complicated by Severe Pan-Dysautonomia caused by an unknown genetic disorder. They were taken in Prince William Forest in Northern Virginia in September 2008.**

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You Have the Right to Remain Silent, PLEASE Feel Free to Do So!

5:39 PM
I would like to remind people that they do have the right to remain silent and that in many circumstances I would love for them to please use this right. Today I was waiting at the end of a typically long holiday line when a woman (I will NOT call her a lady) and her boyfriend/mate got in line behind me. She appraised me and my wheels and I knew I was in trouble. Inside I pleaded with her to use her right to remain silent and not open her mouth, but of course she had to let the ignorance talk.
"A wheelchair, that is a great idea! I need to get one of those! Standing in these long lines just makes my legs so tired." Allow me to state she was in her 30s or 40s with no apparent health issues as she left her mate in line and literally ran out to her car and back later on.
I spun to face her full on and very coldly and evenly replied "I'll gladly change places with you."
About 5 people around us started laughing as I spun myself back around facing forward in a "kiss my axel" movement. I think they were laughing for two distnict reasins: 1) relief that I had handled the situation without a need for security or police involvement and 2) the sheer ignorance of her comment being succinctly put in place.
Really, even as the exchange was going on a part of my mind was in complete shock at the level of ignorance and lack of tact she was giving voice to and the fact that it never occurred to her that perhaps the wheelchair was more than just a portable seat.
The saddest thing is I don't think the encounter even made it into her awareness, and I have no doubt that she will without hesitation make an equally ignorant and inappropriate comment in a similar circumstance given the opportunity. You can not force someone to become educated, only provide them with the opportunity for enlightenment. that said, you can also wish for them to keep their ignorance to themselves!!
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Go

6:06 PM
This morning started off with a series of small frustrations that led to the breaking of my ability to cope. It is generally not something large that causes me to crumble but something small, something little and seemingly inconsequential in the grand scope of everything that, when added to the burden and weight of everything else sends it all tumbling down. I had met and then exceeded my maximum capacity for processing life in general and my life specifically. These moments and times are rare, but they do happen and I am learning not to feel inferior for allowing them to happen but to realize that they happen because I am mortal, human, flesh blood and bone. So after a good cry and informing God exactly how I felt today about His plan for my life, I decided that I needed to DO something in order to regain a sense of order. Normally I would have escaped on a super long hike through the woods where God and I would have had a long conversation and He would have shown me through His creations just what I needed to learn. Normally is not an option. So instead I set out with Nessarose (my wheelchair) and decided to just GO. First I went to the library, one of my favorite places (I love to be surrounded by books) to return my last set of books and see if I could find any new ones. We have a small town library so normally I borrow books from other linked libraries that have a larger selection, but I was able to find a few. Then I went to a restaurant where I had a kids meal and then ice cream for dessert while reading one of my new finds from the library. From there I went down to the old downtown waterfront (riverfront) area and watched barges on the river, enjoyed the breeze from the water, and made a trip to an old fashioned drug store to pick up a medication and something I have been looking everywhere for. Then I went back along the streets lined with family owned businesses, over a river glimmering in the sunlight, and back along quiet neighborhood streets to my home. By the time I got home I was exhausted, but I was also a lot more at peace. I am still processing emotions and having an off day but it is so much better than this morning. Best of all I coped with what easily could have been overwhelming emotions in a positive, productive, and effective way and recognized that *gasp* I am mere human and will have bad days and that this does not make me any less of a person. I shall finish the evening with fuzzy pajamas, hot chocolate, and a good book, and have sweet dreams of a new day tomorrow.
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Sometimes Words Do Not Exist

9:04 PM
I have opened this journal several times to write only to find that the words do not exist for what I have been feeling. At times it is difficult, if not impossible, to capture in words the countless layers of emotion and processing of this experience. I am also a highly introspective person, which can be both a blessing and a curse. In a memoir of an individual who suddenly became paralyzed by Transverse Myelitis, he described the process of coping and "grief" as akin to a Tsunami - just when you think you have it under control and you have accepted the changes in your life you realize that was just the temporary calm of the tide receeding to prepare to slam back into the shore. You think the first year is the hardest for adjustment, but as the end of year one approaches it is starting to become a deeper reality that even though I continue to undergo seemingly endless medical testing there will be no treatment awaiting me that will make a differnece in the functioning I currently possess. Unless God decides to perform a miracle, this is most likely as good as it is ever going to get again. I have known that but now I KNOW that, if that makes any sense. Words fail me here. I am still living my life, savoring each moment, and refusing to live on any terms other than my own. Yet things that used to sting hurt just a little bit more right now, like my protective skin is raw and vulnerable. The moment every morning when I wake up, before I remember all that has happened, is incredible in its innocence but the smack of reality that follows a heartbeat later seems slightly harsher. I am more frustrated by the fact that people try to make me fit their image of what someone with a disability should be, creating an image of a saint who does what they "could never do" and is "coping so well" and is "so strong". I am human, not a saint, and I don't remember being given a choice about this course of my life, I am just doing what I have to do in order to live the life I have been given and I have good days and bad days and days I debate with God. I am the same person I was before this happened, and it hurts just a tad more to see how that identity is stolen from me as people struggle to see beyond the chair and their own issues with it. If I tried to find words to describe how I am feeling they would be raw, vulnerable, pensive, introspective, and re-cognition. But these words are not sufficient, they lack and miss the emotion and the experience and the journey. Sometimes words simply do not exist for this thing we call life, but we can learn so much even where the words can not travel.
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Welcome Home Nessarose the Wheelchair!!

1:04 PM


 

 

Please note the custom seating, the awesome purple color, the chrome push rims and spokes, and the bicycle tires! The good news is she is a dream to drive, she is incredibly comfortable, and she provides excellent positioning. The bad news is that she does not fit in my bathroom door (the wheel positioning is different), she just fits in my bedroom door, and I already scraped the chrome push rim before ever leaving the parking lot of the medical supply store. Plus I am filled with weird emotions. This makes it very real, plus I am frustrated that it is not 100% absolutely perfect with access. Oh well, such is life!
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I don't even play one on TV

7:22 AM
I am no longer allowed to play an at home doctor, not even on television, as apparently in failing to call for emergency assistance last Monday when I had the severe autonomic crisis and then treating the symptoms myself I could have very well suppressed my respirations to a point that when I finally fell asleep my brain could have "forgotten" to breathe. I had not considered the fact that all of the medications I took to treat the symptoms - pain medication, anti-nausea metication, medcations for spasms in my muscles- have the potential to suppress respitations in a normal and healthy body not to mention in a body in the midst of a hypotensive crisis. Have I mentioned that during these crises my thinking becomes a bit murky and not the most logical, probably because with a blood pressure at or below 80/40 the amount of oxygen reaching my brain drops a bit. My neurologist, my amazing and wonderful and incredibe doctor, pointed out my incredible stupidity to me, and in a very nice way. So now we have a plan for how to deal with these episodes and I have in writing a very basic procedure for any emergency care physician to follow should I need to call for emergency assistance. One of the reasons I did not call 911 was because I know that at the local hospital they have never treated anyone like me and I did not feel good enough to talk them through how to do so without killling me off. It is difficult being so complicated.
I also got in trouble for stopping a medication without permission because unbeknownst to me it is also used to regulate blood pressure in people with dysautonomia (that is not why I was started on it or was taking it) and so I was informed I am not to self adjust my medications anymore without explicit physician permission. Oops. Lets see, I also learned that it could take weeks to recover from that big crisis which may explain why I have been so fatigued, so much weaker, why the spasms have been worse, why I have been so nauseous again, and why I have had no appetite (although that does not seem to be slowing down the annoying weight gain - ugh!!). And that is as long as I do not have any more episodes - which I already had an average one last night that I treated appropriately where my blood pressure dropped to 90/38 and stayed in that range for about 3 hours. I pushed fluids, laid down, and monitored it with the plan in mind to call for help if I felt worse at any point. At no point did I feel like I was losing consciousness so it was not a horrid one.
We are also going to do pulmonary function tests since I have been more short of breath since the crisis, and it appears based on the asthma meter given to me in the hospital last December my lungs never returned to full function after that hospitalization. I do not have asthma, but my diaphragm was impacted by the severe muscle weakness. Other than that we are awaiting the results of genetic testing, I see the top specialist in the progressive spastic paraplegia in December, and after that visit I regroup with my nerologist who mentioned a possible assessment at an MDA clinic if we do not get a firm diagnosis from the PSP.
Today I go get my wheelchair, in just a few minutes we leave and I am very excited. Oh, and I also have to restart physical therapy because my legs are too tight - I can not straighten my knees anymore which makes standing hard and walking any steps harder because I rely on locking my joints for stability to walk.
I will update with info on my new chair and hopefully pictures later. I am such a dork excited about my wheelchair!
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It's a Girl!

3:19 PM
After almost four months of anticipation and negotiation, my as yet to be named wheelchair has arrived! From conception way back in July to delivery this Friday it will have been fourteen weeks of awaiting the gestation and arrival of this metallic bundle of delight. There were times I thought she would never emerge from the womb of durable medical equipment and times I thought I would never see her gleaming purple body, but now she is in the main office of the medical supply company and awaiting delivery to my eager arms on Friday morning. I may shed tears of joy when I first see her, let alone when we take our first spin together. I am certain we shall be the best of friends and she will be come a priceless treasure to my independence and mobility. Now I just need to think of a name for her. While I will not be sending out birth announcements (it seems a bit too quirky even for me), I do have a personality hiccup that causes me to name inanimate objects. My coffee maker is Klaus Keurig, my teapot Gretel the Kettle, my iPod is Serenity, my cell phone is Violet, my laptop is Elphalba, my digital camera is Celeste, and my Car has an assortment of names depending upon its behavior but the most frequently used one is Figment. I find this naming of objects perfectly normal and have done it most, if not all, of my life and happen to know for a fact that I am not the only person who engages in this habit. I am just so excited to finally have my wheelchair and know that on Friday she is mine, all mine!!! Pictures will follow upon delivery!!!
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Advantages to Being In a Wheelchair (Part I)

9:29 PM
I was thinking, which tends to lead me to no good, and I realized that there are some benefits to relying upon a wheelchair for mobility. Hence the creation of the list below. I am sure it will grow with time.

* You can never be accused of looking down on someone.
*You never have to worry about finding a seat.
*There are no speed limits for wheelchairs.
* Wheelchairs are eco-friendly so you are reducing your carbon "footprint" to a carbon treadmark.
* You can totally skip the long lines at airport security.
* If you so desire, you can pick a fight with just about anyone safely because no one with self respect is going to take a shot at a gimp.
* People are so impressed that you can maneuver your wheelchair that should you actually say something even halfway intelligent it renders them astonished and amazed.
* A pair of shoes never gets "worn out" seeing as they serve a primarily decorative function.
* Chivalry is revived as people rush to hold doors open for you.
* Wheelchair skiing reduces the height of the fall and what's the worst that could happen - you end up in a wheelchair?
* Two words: Wheelchair Arms.
* You are at the perfect height to check out hind ends that happen to end up in your face.
* Life is an extreme sport, and racing downhill on an open road is like street luge.
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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

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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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