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

A Fraternity I Never Pledged

3:43 PM
Today I was feeling unusually decent in terms of my energy. I have days where I am capable of rolling myself places, and days when the trip from the bedroom to the couch is a feat of great accomplishment. Whether this is a result of the PSP (progressive spastic paraparesis/paraplegia) or the dysautonomia, or any one of the other alphabetical soup disorders I have is up in the air. I think at this point we could pick any one of them and say that yes it could very well be a cause of the variable levels of energy, of strength, and of functionality. So today was a very good, unusually good functioning day and I decided to take full advantage of it. It is a cool fall day here, with bright sunshine and a crisp breeze that causes the leaves to rustle and washes away any remnants of summer. I first ventured to the local library to get a library card, and found myself there in the midst of their toddler story time. Normally this would be precious to me, but we are entering flu season and I am allergic to the flu vaccines. Thus normally sweet and precious little children now appear as germ factories and virus carriers to me until spring slowly transforms them back again. I stayed on the "grown up" side of the library until the walking germs dispersed. While hanging out at the library I found three books I want to read, which is a very small haul for me at a library but I currently have a stack of books that I am still waiting to read left over from my birthday. Besides, it is a pretty short roll so I can go back on most decent days. Then I rolled myself to the grocery store. On the way from the library to the grocery store I encountered my least favorite feature of engineering- the supposedly accessible sidewalk cutaway that is anything but wheelchair accessible. I spent a good 5 minutes fighting against gravity and poor engineering trying to get up onto the sidewalk from the driveway of a business without either 1) dumping my chair and myself into a heap on the ground or 2) dumping my chair and myself into a heap in the middle of the road. Finally I somehow cut an angle and got traction from the grass alongside the sidewalk and with brute force and prayers got up to the sidewalk. I was more proud of that victory than I was proud of just about any other accomplishment. So I began rolling again and realized that a car had just pulled into the driveway of the gas station, and was going to be obstructing my path. Not a big deal, I would wait for the car to turn. Then the person in the car waved at me. Strange. I am pretty new to this small town, and I do not know a lot of people who would be waving at me but to be polite I hesitantly waved back. Then the window rolled down and a guy stuck his head out of the window. Now I knew I had no clue who he was, and I was not so sure this was a situation I was particularly fond of finding myself in. "Haven't I seen you at the mall before?" He asked me this, and inside I started laughing as I wondered if that was some sort of pick up line, and if so just how pathetic that line was even when compared to old and worn ones. "Um, yeah, maybe." "I'm in a wheelchair too." With those words, the walls fell down and we instantly knew - we knew a good deal of what life was like for each other. There was a connection like finding a brother or sister, like a member of a secret society or a vetran of a war. In those words he told me that he understood what it was like to be struggling with rocky sidewalks and people staring and the joke of accessibility and the frustrations and the stubborn will to not let it define you. I grinned at him and said "Oh, okay!" I know, nice response! What can I say, I am a dork?!? He introduced himself, and I introduced myself and then his turn was clear so he pulled away. With a smile on my face I continued to wheel my way to the grocery store,  no longer ashamed or angry about the battle I had waged with the sidewalk because I knew there were others who had been there and done that. I am a part of a fraternity that I never chose to pledge, that I never signed up for but that life pledged me into courtesy of SPS. Others are pledged in by spina bifida, cerebral palsy, multiple sclerosis, or spinal cord injuries among others. Once you are a member you are a member for life because you never forget your experiences and your life is changed forever. And you always respect another member because you automatically know two things about them when you meet them 1) they are facing obstacles and frustrations that are common to most everyone who uses a wheelchair in addition to their personal challenges in life that we all have and 2) they are chosing to get on with life anyway. It is a sense of not being alone, of not being the only one who curses curbs and laughs at "accessible" entrances and wonders who decided the angle of the ramp and if they were deranged or just evil and loves clear downhill sidewalks without any cracks in them and does not take little things like reaching an object on a shelf, tieing your own shoes, or taking a step forgranted. It is a fraternity you hope to never join, but if you do you are glad to know there are others there with you. Now I just need to learn the secret handshake!
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Ice pack on my Pride

8:45 PM
So this evening I had the brilliant idea that since my new AFOs provide better stability when I stand, I should try and see if I could take any steps without assistance. No, I do not know why I temporarily forgot the fact that the last time I attempted this stunt I face planted with astonishing speed and force or the fact that I have a hard enough time maneuvering with my crutches. It seemed like a brilliant revelation and a great way to prove that this disease is not progressive, that I am getting stronger. There might have been a little stubborn pride and will tangled up in my brilliance, a touch of denial, and some strong desire to take back control. So step one was standing without assistance, which is dangerous in and of itself because with my trunk muscles weakened I have a difficult time maintaining balance. In physical therapy, the therapist was literally able to knock me over with two fingers pushing my chest, back, or side. I am a living Weeble Wobble only I do fall down. That right there should have illuminated the predictable outcome of my brilliant idea, but I was so caught up in my revelation that common sense became uncommon. I managed to stand with my feet spread out in a wide stance (nothing dainty or feminine here, I had work to do). Then step two - moving forward. Hmm. This is the part that is really tricky, because with my crutches I use my upper body to puch upward and then just kind of drag, thrust my lower body along for the ride. I twisted at the waist but nothing happened other than a near fall. Okay, so my legs feel like they somehow weight about 500lbs yet are as sturdy as tiny twigs and I seem to have no motor plan for moving them forward without holding on to something. That should have been a red flag, but I was still being stubborn. A few more twists and I looked like a robot set to self destruct dancing. I finally somehow managed to clear the ground by about 0.001 millimeters with the bottom of my right foot while twisting and my foot ended up maybe half a step forward as my arms spun wildly in the air. With all of the wild arm spinning and hip twisting and flailing, my left fot cleared the ground by the same 0.001 milimeters and ended up maybe a half step forward. Yea, woo hoo, two steps. Except I was not done flailing and fighting for balance, and the fight was not in my favor. As I plunged to my knees and broke a further forward fall with my arms my pride also took a spill. The hardwood floor was not the most ideal of landing surfaces, and both my knees and pride are going to be banged up. After sitting on the floor for a minute having a good old fashioned pity party, I creeped my way over to my wheelchair (just those two half "steps" and the forward fall behind me) and hauled my dejected self back into it. Sometimes my body feels better in terms of the muscle spasms, and the dysphagia, and the constant nausea, and the horrid weakness, and the fatigue, and everything else and I think maybe, just maybe I am "getting better", maybe I will walk independently again or even with assistance as a functional skills, maybe this will all go away. And then I test my limits, and hopefully all that I bruise is my ego and my pride when the truth knocks me down. So tonight I have an ice pack on my pride and a few new bruises on my knees. Both will heal with time.
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In Another life

12:52 PM
I kept a blog while I was teaching, and I have decided to link that to this blog because the two overlap in many ways. I have not read over the other blog in a long time, but I know it has some really awesome stories of victories and lessons learned from my amazing kids. It is Fingerpaints and Roses. I also kept a blog during student teaching about five years ago that is entertaining to read, and also contains many reflections on things that worked and did not work and the adventures of the very first steps of a special education teacher. That blog is Changed by a Child.  Enjoy!
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The Little Things

10:00 PM
In this crazy world I am caught up in of doctors and testing, of rare diseases and unanswered questions, of radical and rapid life changes, of the unknown and unknowable it is often the little things that catch me with my defenses down and pierce my heart. I am battle weary but armed and prepared for the daily foes of magnitude, I am not prepared for the simple things that slip past my guard and bring me to my knees. The past few days have brought several little things that evaded my armor and struck at my heart and soul in ways I was not prepared for and never imagined. When I reached into a box and pulled out my hiking boots, with small rocks and packed dirt still wedged into the tread, my defenses were unprepared. Almost exactly a year ago I was delighting in the fact that my body was doing things I had never dreamed possible, that I could find such freedom in movement and explore the world around me away from the overcrowded community on the fringe of the city. I was pushing boundaries, taking time to see my surroundings in an entirely new way, appreciating my freedom, bathing in the peace I found in the middle of God's creation. I spent every weekend that I could in the local state and national parks, and I felt most at peace and most free during those times. As my fingers traced the heavy treads on the bottom of the boots tears poured down my cheeks. I am still mourning for what I lost, and the grief came flooding in waves like a tsunami. I was angry, I was bitter, but most of all I was anguished. It was about so much more than the boots that I clutched like a life line. In the same way that it was about more than the year long access card to the national park that I used just once, last September, before becoming sick or the T-shirt from the summer of 2008 when I was able to not just teach amazing kids at The Pittsburgh Project but do things like go up and down the 40 stairs to my room without hesitation or the valentine from one of my preschool students. It was about the very raw and very vivid grief that lurks just below the surface, a tangle of emotions that I am sorting out but if I tug on the wrong one everything comes tumbling down into a heap, a grief that wears many masks. Sometimes it wears the face of sadness and dispair, other times it wears the face of bitterness or anger, and still other times it wears the face of detachment and withdrawl. Yet it is always the same truth beneath the disguises, and it is a process of letting go and accepting that is so difficult. There are good days and bad days, good minutes and bad minutes. In so many very real ways, my life that I knew has died and I am mourning for that death. Yet I am also so thankful for all that I do have, and I continue to fight and face the battles that rage within and over my body. Just when I think I may be getting closer to really accepting all of this and moving on, a little thing sneaks beneath my defensees and the emotional wounds open wide again. I know it will take time and faith and God and grace and mercy and hope and faith and time, and that for once in my life I am absolutely perfectly normal in regards to something. Sometimes, as I stand guard against the dragons and the giants, the monsters and the boa constrictors, I wish there were not quite so many little things.
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My Messenger in Pampers

4:32 PM
Her name meant miracle, and according to every medical statistic her very presence in my classroom was indeed a miracle. This child born with not one but two very rare genetic abnormalities, a combination that the National Institutes of Health could not find any record of happening previously, was a stunning miracle. With a single crooked smile she had melted my intimidated heart and I swept her up with love into our very special classroom. My rules for our class were that every single child, regardless of any lables that may have been placed upon them or accessories they may require to thrive, was first and foremost a child who could do all things unless proven otherwise. Miracle seemed destined to test my ability to hold to these beliefs, and my ability to patiently and lovingly meet her medical needs. Her personal accessories included a g-tube and a trach, both of which were highly offensive to Miracle. So offensive, that given about 5 seconds she would wiggle a finger under her trach and pull the tube out, and often then rip off the entire system and throw it onto the floor. Given about 15 second and she would also manage to pull our her g-tube during a feeding. Perhaps I am a bit extreme, but I prefer my children be able to breathe without fear of losing an airway, so I quickly became very familiar with the battle required to replace Miracle's trach tube. She hated the tubes and put up an incredible fight for a four year old child. Trust me, language is not necessary for communication. Miracle had some physical manifestations of her genetic disorders, and one day a first grade student stopped in the hall and pointed at her while grabbing a friend by the arm. "Look at that monster! She is a total freak!" My heart broke, broke because 6 year olds had already learned to hate, broke because my children were going to have to make their way in this cruel world, broke because they were blind to the beauty of my Miracle. Some days I questioned whether it was worth all I was doing, whether I was doing anything that was really going to make a difference in the lives of my children, whether my love was sufficient. I delighted in the successes of every single child, but was I doing enough? I began to wonder whether my professors in college had been correct about having to emotionally disconnect as a teacher in order to be successful, to detach and not teach with all of your heart because it required too much from you. We celebrated Miracle's fifth birthday in class with cupcakes and song, with party hats and laughter. I was so proud of my Miracle, of the fact that she had such a fighting spirit, of how much she had overcome and the skills she was building on. She had just begun to use switches to communicate choices, she was very close to walking with a gait trainer, she crawled like crazy and had even pulled herself into a chair. She had the best laugh, she appreciated silliness and used her vocalizations to take part in our classroom chaos, she "sang" along at circle time, and she clutched her beloved cloth diaper as she fell asleep when she was worn out. When we played ball or ran, she liked nothing better than to go fast and feel the wind in her face. One week after her fifth birthday Miracle was not in school. She had developed an infection in her trach and was sick. I called daily to check on her, and on Friday her mother was pleased to tell me that she was back to normal and would be at school on Monday once the doctors were certain that the antibiotics she was on were covering the specific infection. On Monday Miracle's little body could no longer fight and her spirit slipped free of the tubes and braces and limitations that she had battled against. I had never known that the human heart could shatter into so many jagged pieces. Tuesday I wstumbled through the motions, thankful the school had another teacher helping in my classroom, as I lovingly gathered all of Miracle's belongings and art work. I took a yearbook and had each classmate sign it with a fingerprint and every teacher and therapist who worked with her write a message inside. I gathered all of the pictures that I had taken of her and put them on CD and another teacher printed them for me to give to her family. The special education department at my school passed around an envelope for donations to assist her family, and I watched in awe as others gave to the family of my child in such abundance that I was able to provide them with $200 in American Express gift cards to use for gas and other expenses related to her funeral. Parents of her classmates sent in cards for her parents, which I gathered with all of her belongings. I ran my fingers over her cloth diaper and cried, not for her but for me. I somehow managed to keep my composure as I met with her parents and handed over the last possessions, last artifacts I had of their child's life. They in turn amazed me by donating her wheelchair to the school's program so that another child could benefit, a child who perhaps could not afford a wheelchair. Over the days that followed I grew angry with God for bringing this beautiful child into the world only to have her suffer and then die. Where was the miracle in all of that? Then with all of the wisdom of ages, one of my temporary inclusion peers looked into my eyes and asked me "why are you sad? Miracle is in heaven now. Shouldn't you be happy for her?" The wisdom of a three year old floored me. I was sad and angry not because of Miracle's experience, because I knew she was finally freed from the tubes she had tried all her life to remove, but because it hurt me to let her go. As I thought, I realized that Miracle's life truly was a miracle. She was a messenger who exuded lessons on true love, on living each day as if it might be your last, on what is beautiful and precious and of value. Just when I was considering shutting my heart out of my greatest passion because it seemed to cost too much, Miracle showed me that the price is reflective of the value. If I removed my heart from teaching then I would be denying my kids all of me, all of my love and attention and focus out of a selfish desire to not be hurt. Loving hurts, but it is worth it. Because in taking the risks you learn to live, to celebrate the tiny victories, to be in the moment, and you have the blessing to love amazing individuals like my Miracle. She reminded me what life was all about and where my priorities needed to be and continues to give me strength as I face my own medical issues. You may not like it, but you take it on with grace and dignity and style and a willingness to always live and laugh and love wherever you may be. In her honor I have the hands of a small child releasing a butterfly forever etched on my back to remind me of my own Miracle.
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Odds and Ends

10:37 AM
In Virginia I rented a room from my best friend's parents, which worked out wonderfully because I had the benefits of having my adopted family and the safety of not living alone in an area where living alone was not only expensive but also a bit intimidating. I love my best friend and her family as my own family, truly as a second family and am so honored that they saw something special enough in me to include me in their family as one of their own. My best friend is more like a sister to me (we even look a lot a like), only we have never had a fight and we compliment each other wondrfully with strengths and weaknesses and the way we think.
However, every family has its quirks. My adopted parents have a wee problem with not being able to throw anything away because it might still be useful, or someone might need it, or it is still good. I do not have this problem and in fact donated most of my apartment's possessions whenI downsized and moved into the room at their house after an incident I would rather forget. I am weird, but possessions are not that reinforcing to me or rewarding and I can easily fit all of the things that I would greatly miss into my car. Heck, for 9 months I have lived on what I was able to fit into two suitcases and one box! The only thing I missed out of everything I left behind (besides my friends and my kids in my class) were my books.
In a lot of ways unpacking these boxes is like Christmas because I had totally forgotten what was still in Virginia. For example, my wardrobe has literally doubled overnight as I unpacked a suitcase or two because I left behind a bunch of clothes that all "just happened" to be a size 12 which is what I am now that I have regained all of the weight that I lost from the dysphagia. (P.S. I am proud of being a size 12 and do not buy into society's view that I should diet until I am a size 6 - I have been there via a torturous illness and would rather be a size 12 or more and healthy than skinnier and so sick). I discovered framed photographs I had forgotten about that will make my apartment look more like home. Yet I have also discovered some very odd things, things that seem to make no sense to take the effort to pack and transport hundreds of miles north. I think this stems from that wee problem with not being able to throw things away. I am no where near through even a fraction of the boxes, but so far I have found:
* a box of used needles from my Lovenox injections
* a scrap of ribbon
* an open , 1/2 used container of agave nectar that predictably leaked all over the other contents of the box and made a sticky mess
* an empty perfume bottle from Bath and Body Works (nothing fancy or refillable)
* scraps of paper with written directions to places around Washington DC because you know, those are going to help me up here
* a DC Metro card
* a set of old photographs and papers that actually belong to THEM that I need to mail back - they had stored them in my closet, so apparently they became mine?
* half used bottles of shampoo, conditioner, and a half used tube of toothpaste

I am certain there will be more items to add to the Odds and Ends as I continue unpacking. To me this is funny. It also makes you consider how and what you would pack if you had to pack up the belongings of a life of someone else for them. I am pretty sure I would skip the open container of agave nectar, the empty perfume bottle, and the half used toiletries but that is just me. I am just so thankful they packed up my life down there for me!!
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Just Keep Swimming

1:07 PM

For days or even a week at a time I feel like I have everything under control, or as under control as possible when your body laughs at you when you ask it politely to do something like maintain a core temperature near 98.6 or straighten its toes. Then something happens - something physical, something emotional, something in terms of new worries or diagnoses or symptoms or slaps of realities or crashes from the Dysautonomia and suddenly I realize that I have as much control as Pavlov's dogs. Of course, it does not help that I am perhaps the most stubborn person I have ever encountered and so I may have a small tendency to completely ignore the warning signs that my body gives me that I am pushing it too hard and just keep going because I refuse to allow my body to define who I am or what I do. There is only one problem with that attitude, and that is that in the end my body usually wins with a big meltdown and reminder that I can push but it makes me pay. Then there are the emotions that I try desperately to ignore and just push past. Don't I look good in my self made superhero cape (just ignore the fact that every so often I manage to choke myself with it and don't look to closely or you might see that it is made from patchwork, duct tape, and and illusion)? I don't want to allow this illness to have power over me, so I try to avoid the emotional impact that it has because that is admitting it has the ability to control me in ways I hate losing control. I do not particularly wish to grieve for an entire way of living, for a person that I can never be again, for hopes and dreams that I have to exchange for new hopes and dreams. So I try to dodge those feelings until suddenly I find myself in the midst of more emotions than there are words to describe them. I should buy stock in Kleenex for when this happens. It can be triggered by so many things - a seemingly random small frustration that is just the last thing I can handle, an object that reminds me of a year ago, a date of "the last time I...", a word, a bad day, or apparently the flap of a butterfly's wings in Brazil. The Dysautonomia crashes just frustrate me because I want to be doing things, living as close to a normal life as I can get, and yet my body refuses to cooperate and on those days it is a victory if I migrate from bed to couch where I spend the day curled up and struggling to stay hydrated. On those days the idea of wheeling anywhere seems as impossible as the idea of walking across America. Then there are other stresses like sitting in an apartment full of boxes from my previous life in Virginia, seeing my car parked outside my window packed full of more boxes (a car I can not drive but am still paying for, a car that right now is a daily reminder of my losses and that had to be parked right outside my window because that wouldn't possibly touch a raw nerve or anything), and feeling overwhelmed. Thankfully, I was smart enough to realize I could not do this on my own - the physical act of unpacking when my muscles are in such a rebellion and I am hanging on the edge of a huge Dysautonomia crash, and the emotional act of having to go through the remains of a life I still so desperately miss and crave to regain. So today my Mom is coming to stay with me for a few days to help me get organized, to sort through the boxes and the emotions, and to be the voice that reminds me this is all normal for a very abnormal situation. And all that I can do is my best, and not give in to the frustrations or anger or weariness or grief. All I can do is just keep swimming. I am so blessed to have so many people that I can reach out to when I need someone to listen, someone to understand, someone to pray, someone to be there, someone to physically help me, and someone to remind me that I am not a failure for feeling all of these things but in fact for once in my life absolutely and beautifully normal. So for this week my goal is to just keep swimming and to soak up the love of my friends and family.
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Boa Constrictors and Potty Training

3:33 PM
  Oh, I'm being eaten
By a boa constrictor,
A boa constrictor,
A boa constrictor,
I'm being eaten by a boa constrictor,
And I don't like it--one bit.
Well, what do you know?
It's nibblin' my toe.
Oh, gee,
It's up to my knee.
Oh my,
It's up to my thigh.
Oh, fiddle,
It's up to my middle.
Oh, heck,
It's up to my neck.
Oh, dread,
It's upmmmmmmmmmmffffffffff . . .

Shel Silverstein

I remember this poem from Where The Sidewalk Ends, one of my many, many favorite books during childhood and it seems oddly appropriate for my situation. The illness that has decided to declare war on my body is the boa constrictor, and it did indeed start by nibbling at my toes and feet. Right now we are at Oh fiddle Its up to my middle. May it never take another bite!! But I have had this silly little poem stuck in my head for days and the imagery of a big fat boa constrictor nibbling and munching his way north on my body ever so slowly but determined, as if I am a snack. Well Diddle, he will have to be satisfied with reaching my middle!!
This boa constrictor recently advanced beyond my hips and called dibs, he's just at my ribs. In the process he did something to the wiring of my bladder, causing me to no longer have any sensation. Thankfully the muscle itself is still functioning at this time, so it does its job of being an internal water balloon, but the problem is that the signal that the balloon is full never makes it to my brain. I can't tell that it is time to make a dash for the bathroom until my bladder has filled to the point that it is pushing on other organs and causing abdominal pain. This is generally not the best way to reroute around a malfunctioning wire as it can cause pressure on the kidneys. So after seeing my least favorite -ologist, the ever unpopular urologist who is always tube happy, I am now potty training myself all over again. Every three hours I have to take myself to the bathroom whether I feel anything or not and "just try anyway" as I used to chide my niece. Realistically, that is every 3 hours or as close to every 3 hours as I remember. As a kid I got M&Ms and stickers when I went potty on a schedule like this - what do I get as an adult? Urodynamics testing from tube happy doctors and a kidney/bladder ultrasound. I think I had a better deal as a kid! Anyone have any boa constrictor repellent?
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6:44 PM
I am not feeling well due to a combination of pushing myself way beyond reasonable expectations this week and eating a yogurt that was clearly outdated - those dates are apparently not a suggestion or a hint even if it smells okay and tastes okay. Yes, I know that with an immune system that has some serious glitches I should know better, but sometimes I am mortal and make mistakes - and I pay for them. Oh, I pay for them!! So this is not going to be as long of a post or as full of my wit as I would like. Blame the yogurt.
On Tuesday I started attending a water aerobics class that meets twice a week and is made up of me and a group of people all over the age of 50, most over the age of 60. I am the odd one out. I have noticed - and it was impossible not to notice- that it seems as you get older you lose any inhibition regarding nudity in shower rooms. I still dress beneath my towel. Anyway, I use a flotation belt to keep me from adding near drowning to my list of medical issues because while I used to be a highly skilled swimmer, growing up as a "little fish" who started jumping off of the highest diving boards I could find at the age of 2 and mastering every stroke, I have lost core strength and basically have little muscle coordination from the base of my ribs downward. With the belt I can swim the length of the pool several times, without it I can barely make it half of a length because my bottom half keeps dragging and pulling me down with it. I can barely sustain a backfloat on my own, and I can tread water with my chin out of the water for 30 seconds using just my arms without the belt. There are some exercises that they do that my body laughs at, so during those I do my own - like trying to maintain an upright position in the water while rotating my trunk, doing leg lifts to strengthen my legs and core, and testing my boundaries. There is a life guard on duty, but she has warned me not to drown because she hates getting her hair wet, so I have agreed to allow her to keep her hair dry. :) It is amazing to me how differently my body behaves in the water as opposed to on land. my legs are freer, the movements less jerky (not necessarily more graceful), and it is easier to simulate a normal gait pattern in water. I can maintain an upright position with just the gait belt for about 45 minutes (occasionally tipping over) where as on solid ground after about 3-5 minutes circulation to my legs becomes an issue and they turn purple-gray with white splotches, AKA cadaver legs. It is tiring exercise, but in a way that does not cause the same fatigue and pain that other exercises do and I can do exercises that I struggled with in PT in the water with minimal difficulty. I have decided that mermaids have the right idea- they have no need for legs because in their world they are impractical and a burden. To them, we are all disabled because of our legs. Ability and disability are all based upon a frame of reference, and I am thinking mermaids might just have a good thing going.
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New Quotes of the Week 9/14/2009

2:01 PM
In great affairs men show themselves as they wish to be seen; in small things they show themselves as they are. - Nicholas Chamfort

What lies behind us, and what lies before us are small matters compared to what lies within us. - Ralph Waldo Emerson
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Rent a Gimp

8:23 AM
Are you tired of people walking right past your fundraising display without even acknowledging you? Are you frustrated by people who tell you "no" time after time, even when you are using cute children to collect funds? Is the door to door routine getting tiresome? If so, have I got a deal for you. Now for a low, low price of dignity you can rent a gimp for all of your fundraising needs. One cute gimp in a wheelchair can bring in more funds for your organization in a single day than your cute walkers can in a week, with strategic placement and proper attire highlighting full gimp glory. Society may be able to say no to cute little children asking for funds for things like public schools and educational recreation, but few can pass up a gimp. So if you want the most funds for your fundraiser call Rent a Gimp today and watch the money roll in.

Please forgive my dark humor, I come by it both genetically and as a learned coping mechanism for life. My family is hysterical when we all get together, but it is often a humor that some may find slightly disturbing. My brother is a paramedic, my mother trained to be a nurse, I was a special education teacher, and both my mother and I have chronic medical issues. There is enough material there for a dark humor marathon.

Yesterday I helped my stepmother raise funds for the Disabled American Veterans, which is an organization I completely support and I would have stood there selling the ForgetMeNot flowers were I not in my wheelchair. However, I felt slightly like a fraud because I got the distinct feeling that some people thought I had been injured in combat. While I was injured in combat fighting for my darn life, it was not in a war like they are imagining. I do count as having a combat related injury because my father was exposed to Agent Orange and I have mild Spina Bifida. The only injury/illness right now that the government recognizes or acknowledges in the family members of soldiers. The DAV provided me with a loaner chair when the rented one became intolerable, and will allow us to use it as a backup chair when I get my next loaner chair from Wright and Filipis (more about that in another post - I believe it when I see it). It was cute yesterday to watch kids going in or out of the store where we were selling the flowers (a flower for any donation) check out my leg braces, my wheelchair, my wheelchair gloves, and my outfit (I had dressed that morning not knowing what I was doing in the afternoon in a pink T shirt, a pink and brown skirt, brown leggings, pink socks (I have to wear socks with my AFOs) and then white and pink sneakers- not what they expected for a chick in a chair).

The funniest and saddest thing to me is that if I were to post that rent a gimp add anywhere, I can almost guarantee I would be contacted by someone seriously wanting to rent a gimp to bring in more money for their organization, or themselves. I was mocking how people react differently, that pity instinct, but it is so real I am sure peope would want to capitalize upon it if given the chance. LOL Another business venture wasted...
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Random Acts of Ignorance

1:48 PM
I figured it was time to update on some of the best random acts of ignorance that I have encountered recently in my life on wheels. I seem to bring out the very best in people.

* I went with my stepmother to obtain certified copies of my birth certificate that are required for filing social security paperwork and other paperwork. The counters at the courthouse were incredibly high, so I could not see over them. There was one accessible counter, but it was being used by perfectly healthy and mobile individuals. So When our turn came, we were called to one of the incredibly high counters. As usual, the court paperworker immediately talks to my step mom because apparently there is an unwritten rule that if someone is in a wheelchair they have lost the ability to speak. My step mom explains that we are there to get copies of "my step daughters birth certificate" and the paperworker immediately looks out over the counter and replies "Oh, she must be really little!" Um, not so much. "I'm not little, I am just sitting in this really new invention called a wheelchair". I was met by prolonged silence and then an "oh". This enlightenment did not stop her from talking to me like I was five years old, much to the amusement of the woman at the accessible counter for other paperwork directly across from me who was trying so hard not to laugh at her coworker.

* A woman where my mom lives is convinced that now that I have "braces" (the ankle foot orthotics) for my legs I am suddenly going to get up and walk. She actually asked my mom how  much longer I would need the wheelchair now that I had leg braces and could walk. Huh?

* The maintenance man who built the wheelchair ramp for my apartment is very nice, but the other day he asked if he could watch me leave my apartment to see how I did it. Um, would you ask someone who walked if you could watch how they walked out of their home? Wanting to be polite, I agreed and about received a standing ovation for the ability to roll down a ramp while holding onto a long scarf that pulls the door closed behind me. He was marveled and amazed. I felt like asking for a quarter for the show. Yes folks, I can get in and out of my own home all by myself, and I can even roll to the grocery store and back solo!! But to watch that show you have to pay in cash!
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Ripples in the Pond II: The Princess and Her Brother

10:02 AM
Until I was born my brother was an only child for six glorious years, six years he likes to tease me as being six of the best years of his life. In my family dark humor and teasing are finely tuned skills for coping and surviving, for making one another laugh in hard times and for showing love. Then I arrived and was not the puppy dog he was really hoping for but a tiny baby that specialized in screaming and makng disgusting messes that no dignified 6 year old boy wanted any part of. I invaded his territory, but he was willing to negotiate. However, before negotiations could be undertaken (afterall, I was still drooling as my primary mode of communication beyond screaming and the occasional smile), I turned his world upside down. Suddenly I was the focus of the attention of not just his parents but what have seemed like everyone in his world. In the middle of the night, as he slept through the alarms and sirens, his parents might disappear with his baby sister and he would wake up in the morning to find a family friend or grandparent there instead of his parents who tucked him in the night before. At school he may sit in the office waiting and waiting for someone to pick him up, not knowing that we were again at the hospital and arrangements for him were being made. His baby sister threw his negotiations out the window and took over the life of his entire family. Even once the apnea ended, everyone was still so protective of me, and there were still so many medical issues that required ongoing medical attention that I was usually the center of attention. It did not help that I was born with the true little girl diva personality and socialized best with adults where I could show off my precocious vocabulary, my established cuteness, and my humor. Instead of me growing up as HIS little sister, he grow up as MY big brother in our community and roles were reversed. When I had to undergo particularly unpleasant medical testing I would receive a reward, usually a book and a stuffed animal, while he received nothing. Fair yet so unfair. Because our mother was also chronically seriously ill, together we had to face the unknown many times. He became my protector, and my safe place during those scary times. When I know he was scared too he never showed it because he wanted to be strong for me. He viewed me as more fragile. He would get me to stop crying and start laughing by having us race to pack suitcases for whosever house we were staying at that time and then doing things like unpacking mine to try to win or tripping me. I always ended up laughing too hard to cry. He was allowed to tease me mercilessly but he would be the first to come to my defense the moment anyone else hurt my feelings or laid a finger on me. I am amazed that he matured without clearly resenting me for all of the extra attention I required, and for the added stress I placed upon our already stressed family. I am proud to say that my brother is now one of the best fathers I know, as well as an incredible paramedic. I can not speak for him as to what it was like being my brother, but I can say that I know it had to be difficult. I know that it had to be frustrating, and confusing, and scary, and lonely at times. I know that even now being my brother is not easy. It is not easy to watch someone you love and want to protect be at the mercy of a disease no one knows how to treat, it is not easy to be unable to do anything to make it better when your attitude in life is to fix things (as a paramedic he fixes things, he is able to help people, he makes a difference), and in my opinion when you share DNA with that person it is probably scary to wonder if any of that mis-spelling ended up in your DNA and is just waiting. I would not trade my brother for anything. He had to go through the same battlegrounds I traversed as a child, and as an adult, just from a different angle, and together we went through the ones for my mother, and I know he is always there for me and that he is proud of his little sister and would do anything for me. I just wish my illnesses and my upside down inside out life had not caused so many waves in his life. I wish I could have spared him the ripples.
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Teacher without a class

9:50 AM
I have known that I wanted with all that I am, with my very being, to be a teacher since I came to the conclusion that there was not a high demand for fairy princesses in the modern world. Never did I waver from this conviction, and by sixth grade after working during my own free time (I did a lot of independent study) and recesses in the special education classroom in my school I knew that I wanted to teach young children with special needs. This was as much a part of me as the tangle of red curly hair that I cursed every morning as I tried to undo the knots it magically wove overnight and my need for books that rivaled my need for oxygen. Due to the gift of multiple blood clots in my left arm that led to a small stroke just after college graduation, and then a prolonged debate over heart surgery, I was not able to begin teaching as soon as I desired but I taught an audience of one. My Little Bit was my student and together we had great adventures, and she reinforced for me my understandings of early childhood development. I taught her sign language at 6 months of age and regretted it (just a bit) when she used it to tell me exactly what she thought. :) Then my years of teaching began and I was living my dream. I was teaching some of the most incredible, amazing, heartbreaking, perseverin, stubborn, independent, wise, spirited, challenging, rewarding, joyful, creative children who kept me constantly thinking in the moment and using creativity to problem solve and find the best ways to meet their individual needs and play to their individual interests. I can name every child from my three classes that I was blessed to teach, although I must say my average class size was 8 children, but I can also remember most of the children from the afternoon preschool classes for those two years too. It helps that I took hundreds of pictures - and then at the end of the school year gave each parent a CD of the best pictures of their child and a framed copy of my favorite picture.
So this year as kids are getting ready to go back to school, as I see little ones so excited and older kids slinking around with the attitude of being too cool for all of this my heart aches. I have missed preparing my classroom for my children, with the special little areas designed for learning and made accessible in every way possible. I have missed turning a blank and average classroom into a place that is welcoming and intriguing to my children, something that does not feel at all institutional in design or remind them of other concrete brick buildings like hospitals. I have missed opening supplies and preparing them for students to use, and imagining the wonderful creations that will result from their experiences. I miss reassuring parents that I have dealt with just about everything at this point (seizures, diastat, oxygen, trachs, g-tubes, epipens, reflux, feeding pumps, special oral feeding, braces of all sorts, allergies, behavioral issues, sensory issues) but that I will be very aware of the needs of their child. Last year we had basically a mobile crash cart when we left the classroom that consisted of oxygen, two different diastat medications for two different children (clearly labled and separated), an epi-pen, emergency supplies for any g-tube issues, a towel to lay a child on if they were to have a seizure, plenty of rubber gloves, a CPR mask, and a first aid kit. Everything but the oxygen went into a brightly colored backpack, so we did not stand out too much but we also never forgot it while I was there!
Most of all, I miss my kids. I miss teaching them, I miss working so hard with them and watching them put so much effort into mastering a skill, and I miss the huge celebration when they achieved the goal. I miss the laughter and smiles that were an inevitable part of every single day because you can not work with children and not laugh and smile and have fun. I miss watching their joy of discovery and the wonder when something new suddenly makes sense. I miss being able to see the world from their perspective again and being able to take them by the hand and show them a world that is just as much theirs as anyone else's. I miss watching the astonishment of successful communication and the pride of accomplishment. I miss teaching, I miss caring for my kids, and I miss knowing that each day they are growing and learning and I am a part of it. I am a teacher without a class and it feels as if I am missing a part of myself. 
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Frustration on Wheels

4:00 PM
On July 23, 2009 I met with a representative from the customized medical equipment department (I am getting the name of the department wrong, but you get the idea) of Wright and Filipis to order a custon manual wheelchair. The vendor told me it would take 2-3 months to obtain my chair and that after a month I should call to see how the insurance processing is going. Today is 6 weeks later and I called to check the status of my wheelchair order. For the past 6 weeks, my order has been "waiting in line to be processed into the computer" and was only entered into the system yesterday. In other words, for 6 weeks my order was paperwork lying somewhere waiting for someone to pick it up and contact my doctor for a detailed prescription and then submit the paperwork to my insurance company for authrization. For 6 weeks Wright and Filipis did NOTHING with the order for my wheelchair. When I expressed my displeasure, I was told it was first come first serve and my order had to wait in line. That was never disclosed to me in any of the paperwork I signed, nor on the handy timeline of events of ordering your wheelchair that they provided to me. No one told me that I would first have to wait for someone to get around to my order before they even began processing it. If they had I would have gone to a different vendor that would begin processing immediately. Wright and Filipis deceived me by not disclosing this information. While I thought 6 weeks of insurance autorization and perhaps even the beginning of the order were accomplished, NOTHING was accomplished. It is as if I have not even ordered my wheelchair yet. I am beyond frustrated, and disappointed in a company that failed to provide reasonable service on a critical device that my independence and proper positioning hinges upon.
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The Ripples in a Pond Part I

10:17 AM
When you throw a stone into a still pond, it does not just experience its own flight and crash landing into a body of water where it slowly travels through the body of water. The moment it breaks the surface of the body of water the entire pond is changed as ripples spread outward from the point of contact. In ways microscopic or visible, the pond will never be exactly the same again for having been touched by the stone and the ripples spread out further than it seems possible.
In many ways, based upon my experiences growing up, having a child with serious chronic illnesses is like throwing stones into a pond. Some of the effects are clearly visible, like ripples on the water, but others exist below the surface. Some are beautiful like the sunlight dancing on the gentle swaying water, and other are darker like silty mud rising from the bottom and swirling in the once clear water. One thing is clear though, and that is that the ripple effects extend farther than most people would imagine and in ways many would never even consider.
My family was the pond, and I was the one who seemed to constantly be attracting stones to our water. Beginning in infancy (see previous post about The Battlefield), I was medically complex and required a high level of care. For me, this was my normal because I had known no other life, but it caused ripples in the pond of my family. Across the years of my childhood and into my adulthood stones fell, and yet it was not until relatively recently that I truly became introspective and aware enough to begin to see how the ripples and paths of these stones impacted my entire family. I had believed that because it was just a part of my life that I accepted and did not concern myself too much with (until this latest illness that changed the rules of the game), they were the same way. A little egocentric thinking there, which is unusual for me.
I want to spend a few posts over the next week or two looking at the impact, positive and negative, the challenges and rewards that living with and raising and being a part of a family with a child who had (and an adult who has) significant medical needs brought/brings to my family. We are only one family, but we are one family that has been on a long journey!
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My New AFOs

8:53 PM
The colors are a bit more vibrant in person, but after a day that started at 5:30am I am too tired to take any fancy artistic photographs tonight. It took four straps, one tone reducing pressure pad, some special cut outs for places where bones have shifted in my feet, and about 2 hours of fine tuning but they are good to go! They better be, I will be paying for them until next year!! I still have inward rotation at my knees and hips, but when my new wheelchair arrives (I am refusing to consider the copay on that right now or my brains may short circuit) it has features to prevent this rotation. So finally at that point I will have straight legs again for the first time since sometime around last September, when my feet very first began rotating. Tonight, all of the muscles and tendons and ligaments that have shortened from my legs constantly being held in improper positioning and rotation that are stretched back out by the braces are voicing their opinion of the new AFOs. I have a feeling it will be a slow start tomorrow morning, but it is worth it if it prevents contractures, muscle deformity, and provides proper alignment for my joints. And I think they look pretty darn cool too!
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Quick Note At 6 AM

6:21 AM
Today I am going to get my new, and first pair, of Ankle Foot Orthotics - or leg braces. I have wrestled my students in and out of various forms of these for years and so I am quite familiar with them in concept but when you are the one wearing them I am sure it is a completely different experience. It will be wondrous if nothing else to see my feet held in a normal position, with my toes close to straight and my ankles close to neutral for the first time in over 9 months. I forget what normal feet look like attached to my body!! And, as with anything else in life, I am doing it with attitude. I refused the idea of plain white AFOs and instead had the orthotist apply one of literally hundreds of transfer papers I could choose from to give the braces an awesome color and design. I figure this way, people are still going to stare but now I have given them something to stare at! Pictures should follow this evening when I get home!
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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.