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

Betwixt

12:17 PM
Betwixt one year and another, at the dusk of one expanse and the dawn of the next, the ending of a passage and the departure on a new voyage is time for both reflection back and anticipation of the new.

Reflections:
This past year has been filled with events and circumstances I never could have imagined. In January when I traveled from Virginia to Michigan, it was for a 3 month recovery period from the mystery illness that had so sickened me and then I was going to return to work. No one could have conceived of the fact that at the end of the year I would be considered disabled, reliant upon a wheelchair, and diagnosed with a yet to be identified progressive neurological disorder. Sometimes I think it is better that we do not know things in advance but rather find them out one day at a time. I never imagined that I would be "allowed to resign" from the job I loved most in the world, but be proud of the reasons that I was given the options of resigning or being fired. Beyond excessive absences during my time under the Family Medical Leave Act (illegal, but who says the government plays by their own rules?), I was disciplined for standing up for the rights of my children for equal treatment, dignity, and an education. If that makes me a troublemaker, then I would rather lose my job for what I know is right than keep it by being silent and allowing children to be treated as side show displays (I fought against having each class in the school come into my classroom to "meet" (stare at) my kids and ask whatever questions they wanted in front of my kids- my kids are not teaching tools, they are not a circus side show, they are not an exhibit) and receiving babysitting rather than an education. Of course, now I could not physically do the job anyway, but I am still proud that my principles stood. And they stood to the end when I assisted two families in fighting for proper IEPs and placements and services at the end of the school year as I was still officially the classroom teacher through July 1. E mail is a wonder invention indeed. I never would have imagined that this year, amidst all of the medical mayhem, I would fall in love with someone nor that I would end up walking away from him. Not that many years ago I would have been so eager to become what anyone wanted me to be that to walk away would be unthinkable. But when "Prince not-so-charming" refused to promise that he would not use my disability against me in our relationship (AKA I told him I did not care if he later decided to break things off because he decided he hated redheads but I needed to know he would never use the excuse of my illness because I was totally honest with him) I instantly realized I deserved so much better. It is a pretty shallow man who can not agree to not use my illness or disability against me in a relationship and I don't do shallow. I never would have imagined that I would come to appreciate my wheelchair as a tool for freedom and independence instead of cursing it and detesting it. Now I realize that I am more handicapped when I use my crutches or a walker because I have to rely on other people to do everything for me - carry things, pour me a drink, move objects out of my way- than I am when I use my wheelchair and can be independent. I never imagined the beauty I would discover along this winding and rocky detour in life, beauty I would never have known had life not veered off the course it was on not so long ago.
This year's greatest moments include the first time I was able to go to a restaurant, order regular food, and eat it without gagging, retching, or choking. I will never take the simple act of eating for granted again. When I moved into my own apartment, I regained my sense of self and independence and felt a victory over this disorder that has tried but failed to define me and restrain me. Ten incredible days spent with the most amazing friends in Virginia that reminded me to my soul that I am still me, and that also overfilled my heart with the joys of cuteness and the magic of a one of a kind treasure of a boy. Discovering the freedom of swimming and the ability of water to provide my body with a place where movement is easier and my muscles are less inhibited was magical. Watching my Little Bit dance and live her life as a musical never fails to delight me and fill the part of my heart she claimed 5 years ago. Capturing a sales clerk in a verbal headlock when he ignored me and went to serve a male customer who had just walked up to the counter by asking him "Are you ignoring me because I am female or because I am in a wheelchair?" and watching his reaction (my favorite of many really good quick witted comments this year). Dancing in my living room and feeling the same joy of movement, the same thrill of expression, the same energy and silliness on wheels as I ever did on feet.

Anticipation
I have a little black velvet bag that I carry with me wherever I go. It is in whatever backpack or purse happens to be hanging on the back of my wheelchair at any given time, and has been for 3 months now. Inside of the bag are 5 small stones each inscribed with a word. They are "wishing stones", positive words given a physical form so they can be held and felt and clung to when necessary. They are my reminder that the abstract is just as real as the concrete, that just because something like faith does not have a solid form does not render it nonexistent. So I am going to take each of these solid words and use them to write an anticipation, not a resolution but more of a hope or a purpose or a vision for the upcoming year.

Wish There is nothing more properly the language of the heart than a wish. Robert South
Wishes are the fires that keep the stars burning at night. They are the longings of the heart that we may or may not be brave enough to put into words. It is my desire to always have enough wishes to light up the night sky and to have the courage to declare them one by one. Wishes of peace, of joy, of healing, of love, of miracles, of possibilities. Wishes are prayers with fancy feathers.

Create It is better to create than to learn. Creating is the essence of life! Julius Caesar
Life provides you with a certain framework in which you must operate. Whether this framework is a limitation or a canvass for creativity is determined not by life but by how we respond to it, what we choose to create. We write our own narratives, paint our own backdrops, and frame our own snapshots. I seek to write a narrative of peace and joy and gratitude, I seek to paint a backdrop of beauty, and I seek to frame the snapshots of my life in love and laughter. I also know that through creation our true self can be expressed and communicated. This coming year I want to devote more of my time to creating- creating memories, creating acts of love, creating expressions of myself through writing or art, creating the person I seek to be.

Strength One who gains strength by overcoming obstacles possesses the only strength which can overcome adversity. Albert Schweitzer 
For so long I confused strength with the ability to live without needing help from anyone. That was not strength, that was pride and I learned that lesson in a very painful manner. Strength is having the world fall down around you and wanting to surrender to the chaos, but choosing to pick the pieces back up and put them back together again. Strength is a choice. You can choose to give up, to give in, to become defined by the obstacle or you can claim your ground and hold yourself as something more. The choices may be minute by minute, hour by hour, day by day and to the outside world they may appear insignificant but to the warrior they are triumphs. It is my longing to be strong enough to never allow the world to define who I am or what I am, to be strong enough to never surrender my passions in life, but to never confuse strength and pride for it takes great strength to acknowledge when you need help.

Magic Genius is another word for magic, and the whole point of magic is that it is inexplicable. Margot Fonteyn

Magic is living with a sense of wonderment and belief that there are aspects of life that go beyond our comprehension. It is appreciating the small delights with great joy and living with a heart and mind open to endless possibilities. What some call magic others call miracles. To live with magic is to be fully alive and to be open to all of the wonderment, mystery, excitement, and awe that is life. May I never lose the magic of life, may I never cease to celebrate the glory and wonder of the smallest delights, may I never close my heart or my mind to the awe of that which is life.

Dream Dreams are illustrations from the book your soul is writing about you. Marsha Norman
   
Dreams are our greatest desires in life, our passions given living form, our wishes with flesh and blood. A life without dreams is a life that is not being lived. Dreams are messengers of purpose. Often our greatest dreams reveal our strongest passions and that which will give purpose and meaning to our lives. No dream is too grand nor to small, no dream inconsequential. Dreams nourish the soul and propel us ever forward to seek who we are meant to be. For many months I was afraid to dream, but now I am beginning to feel secure enough to allow myself to dream. I hope to fill my life with dreams that push me to succeed, to seek that which will nurture the purpose and meaning in my life, to nourish my soul and set me aglow with possibilities and belief.
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The 2010 Book List

11:05 AM
Inspired by yesterday's (December 30, 2009) post, I have decided to keep a list of all of the books that I read in the upcoming year. I will put a link to this entry on the sidebar and continue to update it throughout the year. I was going to just have a list of books on the sidebar, but trust me that would get incredibly long incredibly fast. :) I am cheating and counting books finished or begun today (December 31) in this list. Any guesses when it will reach 100?
P.S. Books with an asterisk next to them are books that I have read previously but have reread, or have listened to as an audiobook. I consider listening to an audiobook reading, as listening to a book as an audiobook takes me longer than if I just read the book. :)
1. Hurry Down Sunshine by Michael Greenberg
2. The Private Papers of Eastern Jewel by Maureen Lindley
3. The Good Thief by Hannah Tinti
4. Tempted by P.C. Cast & Kristin Cast
5. Eat, Pray, Love by Elizabeth Gilbert*
6. Marcelo in the Real World by Francisco Stork
7. It Sucked and Then I Cried by Heather Armstrong
8. Second Glance by Jodi Picoult*
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Year In Review: The Audiovisuals

10:53 PM
Favorite Books Read This Year:
**This is hard because my books are all neatly on my 3 bookcases at home and I am not, and I read well over 100 books per year easily.**

* Sarah's Key
* Gimp
* The Help
* Handle With Care
* Come Back
* Mountains Beyond Mountains
* Into The Wild
* Moving Violations
* One and the Same
* The Horse Boy
* The Street of a Thousand Blossoms
* Dreaming Water
* They Cage the Animals at Night
*All Rivers Run to The Sea: Memoirs
*The Disappearance of Childhood
* No Matter How Loud I Shout
* Three Little Words
* Snow Flower and the Secret Fan
* In the Absence of Angels
* The Zookeepers Wife
* Still Alice

Favorite Albums
* Love on the Inside- Sugarland
* Live on the Inside- Sugarland
* Green and Gold - Sugarland
* Emily West EP
* Lady Antebellum- Lady Antebellum
* Symphony- Sarah Brightman
* RENT Broadway Soundtrack

Favorite Songs
* I Will Stand Back Up- Sugarland
* Come On Get Higher- Sugarland
* One Day You Will- Lady Antebellum
* Praise You In This Storm- Casting Crowns
* Does Anybody Hear Her- Casting Crowns
* Defying Gravity- Wicked Soundtrack
* Will I - RENT
* La Vie Boheme - Rent
* I Run To You- Lady Antebellum
* Calling All Angels
* Her Diamonds - Rob Thomas
* I'm Alive - Kenny Chesney
* Circle- Sugarland
* All The Broken Pieces- Matthew West
* Vapor- Little Big Town
* Rocks in Your Shoes - Emily West
* She's With Me- Collin Raye

Movies Viewed This Year
* RENT The Live Broadway Production
*Sunshine Cleaning 
* The Cake Eaters


As must be obvious, I am much more of a book person than a movie person, and I tolerate television when I have nothing else available to provide entertainment. The shows that I watch are virtually all educational and there is only one fictional series I can think of that I watch on a regular basis. My favorites are more along the lines of National Geographic specials and Discovery Channel. In movies I prefer Documentaries to most mainstream movies, and I know I watched a few good ones this past year but I am blanking on their titles. Oddly enough I could keep listing books for a good while longer, even without access to my bookcases. :) Thus the year in multimedia review.
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Christmas Presence

12:44 PM
What you do speaks so loud that I cannot hear what you say.
  - Ralph Waldo Emerson

I will be the first to admit that it is incredibly easy to become entangled in the mob scene of pop-culture Christmas and the frantic energy to buy love, to give love in shiny packages and dollar signs, and to measure worth and value in things. After all, society inundates us with the message that only perfect is acceptable, only more is even worth considering, and only money spent speaks of love.

Last Christmas season I had an in-depth, advanced level course in the fact that all of the superficial things that receive the publicity and glamor of the holidays are meaningless. I spent 11 days from December 12 through the evening of December 23 inpatient as doctors tried and failed to determine a diagnosis regarding the progressive muscle weakness and inability to tolerate food (and go figure, one year later the second verse is an echo of the first). Yet even though I was 500+ miles from all of my biological family, I was not alone. Just as I had not been alone when I was first hospitalized in October, or any of the time in between. God has blessed me with a second family in Virginia, with incredible friends who constantly amaze me with their love. On Christmas Day last year I somehow managed to get myself dressed up in a dress I had bought two months earlier for the Christmas I planned to spend in Michigan and laid on the couch as they included me in their Christmas festivities. Their little blue eyed boy, my beautiful mystery of a student who became my beautiful gift of so much more, sat on my lap and opened gifts with me. I had a family and love, and I learned that actions tell more about a person than words ever could.

This Christmas I miss my dear second family in Virginia, but was blessed to be with my family in Michigan. On Saturday my mother's family all gathered for the first time in two years. I was nervous, because it was the first time any of them would be interacting with me since I had gained wheels and I was afraid I would be treated differently because of it. More than anything, I just wanted to be seen as me. I had a wonderful time and for the most part I was accepted with grace and love. So much has changed in the dynamics of our family since I have grown up, and I treasure my family more than ever. There were a few issues where it was clear through actions that all of the words in the world were meaningless, but I have decided that is neither my fault nor my flaw.

I loved watching the little ones run around, open their presents, and just be kids running wild in celebration. Words spoken, and unspoken but communicated through actions, let me know that I am still very much a part of the family. Our annual tradition of the wrapping paper fight was especially well done this year, with some strategy and team work involved.

More than the gifts, or the lights on the tree, for me it was about the Christmas presence - truly being there, truly choosing to offer your heart to one another, and loving beyond any differences. The presence of the gift of peace and hope and forgiveness and love.
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Same, not Different

1:54 PM
This past weekend was the family Christmas activities for my father's family. A tradition of sorts has been established that each year the families gather at a hotel that has a swimming pool (easy entertainment for the kids grown and not) for the weekend. We have a big family meal on one day and then a smaller get together the other day for presents and such. This year the chosen hotel was just one town away from where I live, so the original plan was for me to spend the day with everyone and come back home at night. However, my stepsister's husband had to work and so she invited me to join her and her kids in their hotel room. It was a wonderful weekend where my braces and wheelchair and crutches were insignificant, where no one treated me any different and where I could just be a part of a family celebration. It was just assumed that I would be included rather than looking at obstacles and thinking it would be too much work. I have not always been close to my stepsister and brother, or to my stepmom, especially when I was growing up but they have genuinely formed a family that cares about me and accepts me and is protective of me without limiting me and that just gets that in spite of all the medical stuff I am still Bethany. I thoroughly enjoyed being able to swim so much, as in water I can move my muscles so much easier than I can in any other situation. I do cheat and use a flotation belt because I struggle to maintain balance and to hold my legs up when swimming, but the difference in motion is amazing. In the pool I could participate in all of the fooling around and playing without struggling with my wheelchair. I was able to play with my nieces in an environment that was without barriers. On Saturday evening, the spa was cooler than usual so I was able to safely sit in the warm water and place my feet in front of one of the jets for what was an incredible "massage" that helped to loosen up my muscles.
Two funny stories. The first involves being completely and inappropriately dressed for an occasion. At the hotel, the swimming pool was directly next to a large conference room (actually it connected through sliding glass doors and could be opened up so the pool and room were connected). As we were swimming Saturday morning, complete with children splashing and jumping into the pool and shouting and being kids (and some adult males being kids with them), we discovered that a funeral memorial service was being held in that room directly next door. Now, not only was it bad planning to place a somber event next to the pool the weekend before Christmas but the only way from the pool back to our room was either to go up a flight of stairs and across the upper floor then down a flight of stairs (um, apparently the wheelchair was not a clue to the hotel staff that this plan was not a reasonable option) or to go right through the buffet area for the funeral. So not only did we have to parade soaking wet, in flipflops or little bare feet through the somber set up but my swimsuit cover up? A nice wrap with brightly colored skulls and cross bones all over it. I have now officially crashed a funeral in my swimsuit and a skull and cross bone cover-up.
Second story requires some background knowledge. Last week my stepsister graduated from nursing school. Awesome! My dad and stepmom obviously went out to her graduation. I forgot what day her graduation was and so when I had a toilet emergency on that day I called them to see if they happened to have a plunger I could borrow. As soon as I called, I realized where they were and that from 3 hours away they were not going to be able to help me out. They actually did help me through a call to a friend who lives in the same apartment complex who hunted down a plunger for me, and all it cost me was some embarrassment. So yesterday while we were opening presents my dad and stepmom announced that they had a very special present for me. With a large red and green bow on top and red ribbon curling around it I was presented with a plunger complete with a tag reading "In Case of Emergency". I had to laugh, and everyone who knew the saga laughed along with me. So now when I am asked what I got for Christmas I can proudly say "a plunger!". :)
Tomorrow I am going over to my Mom's to spend Christmas with her and then on Saturday we are going to my Aunt's house for Christmas with my Mom's family. I am more nervous about that event because no one from her family has seen me or interacted with me in person since I became sick with whatever this dystonia/progressive spastic paraparesis/unknown syndrome is. I just want people to treat me like me and not be uncomfortable or all weird because of the chair and the changes in my life. But I am so excited to be celebrating Christmas with far greater health than last year, and not desperately ill and an 11 day inpatient stay right up until late on December 23. And I can even eat all of the Holiday foods this year too!! What a difference a year makes!! I am so blessed!
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Lessons From The Front Line: Hostage Negotiations

2:37 AM
I have decided to start to share some of the many, many multitudes of stories and lessons that I have stored away from my years as a teacher both because they are incredible meaningful to me and they might be of some small assistance to someone else. I decided to start with one of my favorites.  I learned early on that I refuse to negotiate with any child who still needs their rear end wiped after going to the bathroom or who still wears diapers. The classroom is not a democracy, it is a dictatorship and I am in charge. I offer plenty of opportunities for choices, but I never make no an option when it is not an option I am willing to accept. Instead of asking "will you please clean up the toys" I might ask "do you want to pick up the blocks or the toy cars". I may ask a child "can you walk to the table by yourself or do you need some help to make the right choice?" or "Do you want to sit in the red chair or the blue chair?". This does not mean that my delightful, inquisitive, stubborn children did not routinely put me to the test in negotiations.
During my first week of student teaching we were transitioning from center play time to lunch and Desiree had been using the computer to play an alphabet/phonics game. When I informed her it was time to wash her hands and come sit at the table she stared me in the eyes and said "No". I gave her an opportunity to make the right choice and she informed me that she was not finished on the computer and was not going to come eat lunch. A hostage negotiation situation was quickly emerging. I very calmly walked over to the computer where Desiree was working, reached behind it to the wall outlet and unplugged the computer. I then informed her "Computer time is over. Do you want to wash your hands by yourself of do you need me to help you?" Completely shocked that I would follow through and actually disconnect the computer, Desiree very calmly washed her hands and sat down as requested. At no point did I have to raise my voice, or bargain with her, or physically engage with her.
Ella was a highly precocious 2 1/2 year old who never failed to keep me on my toes. A peer had a highly desired toy camera, and Ella decided that the best way to get this toy was to cry and have a dramatic tantrum. I informed her that her choices were to wait patiently for a turn, or to go without playing with the camera for the day because crying and screaming were not going to work. At that moment her very sympathetic peer delivered the camera to her in an effort to make her feel better. With a wicked grin, Ella looked at me and said "Well it worked for me!" I replied "Not so much. The camera is going in time out for a while until you can show me that you know the right way to ask for it and to wait your turn. Crying and screaming is not how you get the things you want in this classroom."
For some reason my three year olds loved to run laps around my classroom like it was a track course instead of a classroom filled with obstacles and equipment. Rather than repeatedly asking them to slow down or surrendering to the chaos, the rule became a simple choice that laid out the consequences and avoided any negotiations. "Show me walking feet or show me sitting bottom". I did get the occasional adorable response along the lines of "my feet just won't walk, they HAVE to dance!". Then we might resort to a few rounds of shaking out sillies out at circle time so our walking feet could come back out. :)
Never did I make no a choice unless I was willing to have a child give me no as an answer and respect that choice. No could be a choice for choosing materials in an activity, for activities during free play, for choosing reinforcers, for deciding if a child wanted a turn during a special activity and in those situations I respected it. No could not be a choice in following directions, obeying rules, and participating in academic activities so instead of negotiating and entering into plea agreements I simply offered choices where either one was still an appropriate choice and a victory. Often this meant doing the task independently or requiring help to do it, but either way the task got done without arguing over it.
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Two Steps Forward, Two Steps Back

10:16 AM
Expectations. I think the biggest issue, besides my inherent dislike of the teaching university approach to medicine, was a failure to match up expectations. My expectations for the appointment with the specialist, the neurogenetics specialist, was that he would be offering a second opinion and possibly assist in naming the overall syndrome that has caused the dysautonomia, the immune system difficulties, the ataxia, the sensory losses, and the abnormal muscle tone. These expectations came from the fact that my neurologist whom I adore sent me to him for his opinion on whether or not this is progressive spastic paraparesis and for a diagnostic second opinion. The doctor's expectations seem to have been that he would provide a diagnosis for the symptoms and begin a treatment plan, but not address the overlying issues or try to put the pieces together. Thus when he made the "profound announcement" that my feet and lower legs seem to have dystonia I was less than impressed. We went through that diagnosis months ago. I was hoping for something new. I already knew I have "dystonia" - abnormal muscle tone- in my legs. We need to know WHY and regarding that all he could say was that he was puzzled. Really? I drove 2 hours each way and waited 3 months to see you to get a diagnosis I already had and to have another doctor admit that they are puzzled? He thought he was accomplishing something great by pronouncing it dystonia, and I was just trying not to cry because we were back to where we were months ago. He even reverted back to the "toxic medication" diagnosis that was tried back in December 2008 and debunked when I was removed from virtually all of my medications and continued to get sicker. So with that off the table, he proposed some treatments. One, I have to stop taking the Reglan that I just started a month ago because Reglan can cause and aggravate dystonia. The only problem is that the reglan is what is allowing my digestive system to function and for food to progress out of my stomach in anything near a normal time frame. So now I am stuck trying to problem solve with my internal medicine doctor (I do not have a GI doctor, and really don't want to add to the village of doctors) something that will help because otherwise by dinner I still have breakfast sitting in my stomach. Then he wanted me to start on L-Dopa a few weeks after the reglan cleared my system. Something about L-Dopa triggered a warning in my mind but I could not pull to memory why. Of course it was not until after I got home that I remembered why L-Dopa was setting off alarms. In college I was given L-Dopa to try and treat muscle spasms associated with restless leg syndrome and had a horrific reaction to it that caused hallucinations and very abnormal behavior throughout the night. I prefer not to see things that are not really there, so I need to talk to MY neurologist and see what we can do for an alternative plan. The doctor at U of M also seemed to think he was taking over my care, but that was not my expectation and is not something I am agreeing to unless the doctor I currently see refuses to be my neurologist anymore. I trust her more, I prefer her style of medication, and she "gets me" better - she listens when I talk, she appreciates my knowledge base, she treats me as part of my own medical team. Yesterday I was treated repeatedly as if I were a teenager instead of a closer to 30 than anything adult. Curses upon looking so darn young for my age. The doctors also overlooked critical information like the newly emerged heart murmur, the association of the onset of muscle weakness with the inability to eat, the fact that my legs turn "cadaver leg" purple/gray after standing for just a few minutes, the loss of sensation, and the pain after using muscles as well as weakness and fatigue. While I am thankful the doctor confirmed that there is indeed something abnormal going on, I am frustrated that my expectations and his did not overlap virtually at all. I now hope when I meet with my neurologist (she said to see her after this appointment) we can discuss these expectations, my experience, and how to incorporate this into what she already believed and knew and go forward from here. Two steps forward, two steps back, but at least steps are still being taken.
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Lab Rat

8:55 AM
I considered removing the post from a day or two ago, but the emotions in it are so very real and are just as much a part of what this journey entails as the laughter and joy. It may not be as pretty or enticing, but it is a side of dealing with this and the truth is that even though I am able to remain positive a lot of the time, I am only human. When I read back through this at a later date, I want to read back through and see an accurate representation of the journey - both the beauty and the shadows. I apologize if that makes anyone uncomfortable.
Moving onward, today I have a very important medical appointment with a top specialist at the University of Michigan. He is a neurogeneticist and also a specialist in progressive spastic paraparesis/paraplegia. My amazing neurologist referred me to him for a consult to see if he thinks this fits the pattern of the progressive spastic paraparesis (PSP) or if he has any other ideas regarding what this could be. All of my doctors seem to agree there is a genetic disorder at play here, because the statistical odds of so much "going wrong" in one person at such a young age at the same time without a genetic "umbrella cause" is astronomical. As one neurologist put it the odds are like being hit by a bus while being struck by lightning and winning the lottery without having bought a lotto ticket.
This will make for a long day. A long drive, most likely a long wait for the doctor (specialists never seem to run on time), a potentially long appointment (the paperwork said 1-3 hours! What takes 3 hours???), and then a long drive home. But if there is hope for answers, it is all worth it. I am nervous though. I am nervous that once again I will get my hopes up only to have them smashed. I am nervous that the doctor will not be receptive to listening to me and truly hearing me. I am nervous that once again I will be treated with disrespect and my concerns and knowledge devalued. I am nervous there may be no answers. I am giving these fears to God and praying that His will be done, and that I have an open heart to His will.
It is beyond cold here today (windchill is in the negative digits) so this could make for a fun doctor visit. Because of the dysautonomia I have to dress in layers in order to maintain body temperature. Layers include leggings, leg warmers, and multiple pairs of socks underneath my jeans, and two or more shirts layered beneath my jacket. In winter I always have to wear a hat to help keep warm (sometimes even in the house), and scarf and gloves. So I have a feeling I may end up having to change once I am at the doctor's office to remove a few layers. I am very much like the kid in A Christmas Story who can't put his arms down. But it is either that or my body temperature rapidly plummets. Considering I drop down around 97.4 inside the house without provocation, imagine what it would drop to outside in the cold!!!
I will update with any news from the doctor, any funny stories, or with a new journal entry soon. I have coffee to finish drinking and then I need to start to assemble the layers for the day. :)
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No One Promised A Rose Garden

11:05 PM
I have some really beautiful pictures that I am going to come back tomorrow and add to this post as I am using my new mini computer that I received for signing up with Comcast and all of my photographs are stored on Elphalba the large laptop. Beautiful roses from a real rose garden.
Anyway, I realized tonight that I only write about the more positive aspects of dealing with an illness such as mine on this journal and someone brought to my attention that this does a complete disservice. I am not telling the full story, I am hiding the truth, and I am basically telling lies of omission. Should anyone in a similar situation ever find this journal I want them to be able to read it and know that the hard times are just as normal as the good times, that there are incredible struggles, that there are times where you wrestle with God but that in the end it is still worth it.
Right now I am dealing with a lot of anger - anger at God for allowing this to happen and not intervening with a miracle, anger at my body that continues to betray me, anger at a world that is so inaccessible, anger at the fact that my life was turned upside down like a snowglobe and vigorously shaken and the pieces have yet to fall down around me in any order. I know that this is perfectly normal and a part of the grieving process for the loss of who I used to be. I am also weary. so very weary. Weary of constantly having to be vigilant for complications, for simple things as having to remember to eat and drink, of having to check continuously that the medical care I am receiving is appropriate and no mistakes are being made, of having to be an advocate for myself and face the wrath of doctors and nurses who prefer placid, docile, and unquestioning patients. I am weary of the hunt for a diagnosis and over a year of not knowing, of over a year of feeling powerless to something that has held me hostage in my own body. I am tired of living knowing that at any moment another autonomic crisis can strike without warning and that we have no plan for treating these other than careful fluid administration and time.
A year ago I was certain we would find a diagnosis, treat it, and I would consider on with my life like I always had in the past when a new medical issue arouse. I never anticipated being where I am now, and the permanency of the situation is beginning to really hit me. This very well may be as good as it ever gets and that frustrates me. I am also tired of being sanctified like some holy saint for dealing with this illness "so well" and being so "brave and strong" and doing what others are certain they "could never do". I might be mistaken, but I am pretty sure I never signed up for this. I am living the life that I was given to the best of my ability and I see nothing courageous about that and you would be astonished by what you are capable of doing when it is the only option.
I know that this is not how I normally write and I am taking a huge risk writing with an open heart about the more difficult aspects of living with this disease, these many illnesses, this body that is damaged and malfunctioning. Before anyone worries, I am not depressed and there are countless times in any given day when I am joyful and overrunning with gratitude for all that I have. But the journey is not easy and I would do it a disservice to continue to hide the hard parts and provide a sugar coated reality. No one promised a rose garden, but more than that I think even in the beauty of a rose garden there are sharp thorns that slice at you.
Tomorrow is another day, a day yet untarnished and untouched and for that I am always thankful. Each day is a new start, a new beginning, and a new gift. And I never once have questioned how richly blessed I am, especially with love.
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Randomimity

8:32 PM
It has been a while since I wrote anything on here. I think part of it is just not "feeling" like writing, and part of it is not feeling like I have anything worth writing about. The holidays are very special for me, but they are also filled with memories of how bad things were last year, and with anniversaries of "lasts" starting in September and going through December. December 12 is the one year anniversary of the last time I walked independently, December 24 is the one year anniversary of when I received my first wheelchair (Merry Christmas!).

This post is going to be a bunch of short random notes and such, hence its title "Randomimity" - my word for an assortment of random and unrelated things that are put together, often the way my mind works leaping from one thing to another. Linear thinking is not my strength, as I tend to think more in the fashion of a thousand ping pong balls set loose simultaneously in my brain at the start of an idea.

I have been receiving packages in the mail from UPS and FedEx a lot recently as my Christmas shopping has been done online. Living in a small town and having limited access to transportation, amazon.com has been a blessing for Christmas gifts. However, apparently I need to call UPS and FedEx and ask them what visual cue they need beyond the large, traffic cone orange ramp directly in front of my apartment door to realize that perhaps just dropping the package on the ground beside the ramp and leaving (sometimes with a courtesy bang on the door) is not helpful. I either have to risk falling on my head trying to pick them up from my chair, or get out of my wheelchair and crawl in order to pick up the packages. The good news is that I am almost done with my Christmas shopping.

Those beautiful, colorful AFOs that are pictured in my header? Those have become expensive, colorful pieces of art for the past two weeks. Due to the fact that my feet go into a spastic toe point and rotation even when in the braces, I have developed two red, puffy, and calloused and cracking areas over bony deformities on my feet (the bones of my feet have shifted from the constant spasticity and abnormal positioning). The risk of severe pressure sores caused my neurologist's office to make the decision to cease wearing the braces until my feet heal and then we will problem solve a solution. I really hope those do not end up being $300 (my copay) pieces of art long term!!!

A few nights ago I went with my stepmom to a Christmas party through the Disabled American Veterans. It was a lot of fun, the food was great, and I did fairly well at the gift raffle too. Considering I never win anything other than the genetic lottery ;) I won a nice "smelly stuff" bath set and an electric griddle. Last time I tried to make pancakes I set of the smoke alarms in my apartment for well over 30 minutes because the frying pan smoked, and I could not climb and get to the smoke detector to turn it off or wave something in front of it. All of the neighbors knew that I burned pancakes. Humiliating when you have people you don't know asking you if you like your pancakes well done. :) So now I can try again with proper equipment. I also got to test my new wheelchair in some interesting conditions including gravel, muddy dirt, and grass up onto a curb. I was able to navigate all of it on my own and even got up onto the low curb without needing assistance or having to go backwards.

December 11 I have an appointment to see a specialist in progressive spastic paraparesis to obtain a second opinion at the request of my amazing neurologist. I am nervous because this journey has been so difficult with so many doctors being unable to figure out what is going on and some even falling back on the "you are female, it's all in your head" diagnosis. I am so desperate for a diagnosis, an answer, a name of this monster that it makes me nervous to get my hopes up and nervous that once again I will get an "I don't know". Then on December 15 I have pulmonary function testing because my lung function never did appear to return to normal from when I required oxygen inpatient last year, and I am having some shortness of breath with exertion and at night.

A few weeks ago I proved that a hot glue gun is aptly named and significantly burned my finger, causing two blisters (one the size of a quarter, one the size of a dime) and still healing skin now that appears like it will scar. Personally I blame Martha Stewart for making Americans like me who do not have any arts and craft abilities think that it is oh-so-easy to do anything with a hot glue gun, glitter, and supplies from a craft store. It's not. I am not that kind of creative. I may be able to rig up equipment for children, create sensory activities that are functional and fun, and build my own teaching tools, but I can not manage crafts that require hot glue and frills. I need to remember and respect my boundaries.

I will try again to write a normal entry soon, but I make no promises. :) But I am alive, relatively well (I caught some sort of funky virus that is enjoying messing with me, but so long as it does not bring the flu along as a party guest I can totally make do), and enjoying the holidays! Thank you for still choosing to be a part of this journey with me, even though it has more bumps than a mogul hill and more left turns than a NASCAR race.
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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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Vampires and Nerds and Sphincters, Oh My!

7:34 AM
It was a cold and foggy morning, just before the sun would begin to ascend in the sky and start to slowly burn away the misty vapor that encompassed everything in a murky haze. While neighbors slept soundly in their warm beds, completely unaware of what was lurking in the dark fog, creeping ever nearer to my home. By the unholy hour of seven o'clock in the morning, before the sun's rays had struck over the horizon and as the darkness continued to cling to the cold blanket of foggy mist a rattling tapping was heard on my metal screen door. I knew it had come for me. Through the darkness, the fog, and the unholy hour it came and my defenses were not strong enough to even attempt a counter attack. With a groan and a deep breath, I flung open the heavy metal interior door to reveal one perky vampire dressed in Old Navy Fleece standing outside my door. Vampires should never be perky, let alone at seven o'clock in the morning but apparently she had not read the Vampire Handbook. This might explain why she was eagerly working as dawn approached instead of in the full coverage of the darkness of night - she had not yet read the fine print of her alternative lifestyle. I invited her in, since everyone knows a vampire can not enter a dwelling without an invitation from a living human being who does not seek blood for a living. Her hands were as cold as ice as she decided which vein in my arm would provide the best access for the snack sized tubes of blood that she needed to collect to ship off to the central laboratory for investigation into my human genetic structure. I think perhaps one small tube is saved and allowed to age like fine wine for taste testings much as we perform wine testings. As she slid the gardenhone, um needle, into my arm I think I caught a flash of fang glimmering in her grin as she watched my blood quickly fill up the tubes. Ruthless vampires. With a square of gauze and a bandaid, guaranteed to cause a rash as I am as allergic to medical adhesives as vampires are to garlic, she was finished. So now my blood will be intrusted to the vampire couriers of FedEx and I can go back to sleep for a while since it is still dark outside! The results of the genetic testing on the blood collected will more than likely take a while, as the nerds try to separate out the specificly identified genetic markers to see if I possess any of them, and I am just thankful that the sphincters at the insurance company have agreed that these highly expensive tests are indeed covered and medically necessary. Vampires and nerds and Sphincters, Oh My!
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60 to 0 in 5 seconds flat

11:01 AM
Last night the dysautonomia decided to remind me just how much power it possesses over my ability to function at the most basic of levels. I had one of my most severe "crashes" in recent memory, and most dramatic in terms of onset. The headache had been nagging at me for a while, but given that I have horrendous migraines that without high dose medication would be a daily torment I did not pay much attention to it. It did not even warrant tylenol let alone my pain medication. Then my temperature regulation went haywire, but that was easy to accommodate by changing into a summer shirt and boxer shorts. I was laying in bed listening to music and relaxing when in under a minute my body crashed. My headache escalated from a tolerable "2-3" on that stupid pain scale to a torturous "7-8", I became intensely nauseous, my vision began to fade out as my body prepared to lose consciousness, and I began to violently tremor. I had to fight through the head spinning, vision fading near unconsciousness to turn off the music that had become torture, to go get my blue barf bucket, and to grab an ice pack and water bottle. Those were the longest two minutes. Then all I could do was force down a double dose of antinausea medication and my pain medication, try (and fail) to eat something with salt to help bring up my blood pressure, sip on water, and lay absolutely flat and still while praying desperately. I could not sit up without the risk of losing consciousness, I could not move without risking vomiting violently (and then losing the medication I had struggled to get in to me), and my lower extremeties felt as if they weighed three times more than normal. I was hot and tremoring primarily in my legs. In other words for a good two hours I was miserable. Then finally the medication and liquids and laying flat and still all caught up and I managed to fall asleep. This morning I still have a bit of a headache, am exhausted, and my legs are sore but I am feeling so much better than last night. I hate these reminders of just how powerful this monster is and how it can take me from feeling decent to feeling dangerously awful in no time at all. With little to no warning it can shut down my body and hold me prisoner until it decides to release me. I have to just keep on living, because I refuse to live in fear of this monster, but it is like living with a shadow over at least a part of you or a nagging awareness that at any moment even the best day could crash down around you. This is my monster, and we are inseperable until a cure is found, so we face the world together - and sometimes he behaves and sometimes he rages but never do I surrender to him and let him live my life.
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Dreams of Rocking Chairs and Gray Hairs

9:35 PM
It is pretty rare for a movie to hold my attention from beginning to end and actually have characters that I relate to on a personal level. This is especially true after the past year of dealing with this illness and growing to detest most of television and movies after spending hour upon countless hour too sick to do anything other than half watch the glowing box of mind numbing pointlessness. So when I write that I watched a movie today from beginning to end, and even paused it when I needed to answer the phone or force myself to drink something, that is saying something very powerful about the movie. I watched "The Cake Eaters", a movie I had never heard of before comng across it on Showtime. It is about a teenage girl with Friedreich's Ataxia, which they portray as a terminal illness. She is basically used as a tool for her mother (who can not see her as anything more than her disease) to gain attention as an artist, she is an outsider because to her healthy peers she is a "freak", and she wants to find someone to have sex with her before she dies because she is certain no one could ever love her. I am doing the movie an injustice in condensing it this way, but trying to summarize the emotional plot is difficult. I could completely relate to the girl in the movie because I have felt my entire life like "an other", and for years like I was somehow "less than" because I was born with a body that did not work according to factory specifications. I remember those years as a teenager wanting desperately and working so hard to hide the differences, the toll it took fighting to not allow anyone to see more of the monsters in my life than was absolutely mandatory. I have also felt like at times people have used me as a prop to garnish attention for themselves or been unable to see me as anything other than my disability. That feeling of exploitation, of being made inhuman and into nothing more than a diagnosis is something you never forget and that you rage against even if you rage silently inside. Most of all I related to her fears of never knowing love and not having enough time in life. I am all too aware that it is going to require someone beyond the definition of incredible to be willing to risk loving me, to see beyond all of the brokenness to see the whole person that I am beneath the surface, and to choose to enter the chaos that is my life. Whether or not such a creature exists is a puzzle to me.
Yet my biggest relation to the film was the sense of urgency, the sense of needing to live now because time seemed to be so elusive and so flimsy, like a vapor fading in the sunrise. I have a relatively creative and imaginative spirit, and I can see the possibilities where others see only the impossible. So it has always been frightening to me that in my own life I am unable to imagine myself growing old. I want to imagine it, I want to spread out my life like a time line and laugh at the little old lady with gray curly hair sitting in her rocking chair but I don't see her. When I think of my life and imagine it, when I dream of the future, it all becomes a haze around middle age and I can go no further. It is truly impossible for me to imagine growing old. This creates a sense of urgency in my own life, the need to live in every moment and to not waste this gift of life on the inconsequential things because I too can not sense a life that stretches into enough tomorrows to feel comfortable. I probably sound morbid and overly dramatic, like I am trying to work this thing for all I can, but anyone who knows me knows that I very rarely reveal anything other than the lighter side of this journey. I protect those that I love from the harder aspects, from the monsters that sometimes torment me at night and the harsh realities that have settled into the core of my being years and years ago. I don't waste time feeling sorry for myself too often because that is time I can not get back, and that time is a precious commodity. I am just processing all of these thoughts and emotions that arose from this amazing movie and seeing so much of what I have experienced - in terms of emotions and such- portrayed so incredibly. When I go to sleep tonight and dream of any countless dreams, I wish it would be dreams of growing old and rocking chairs and gray hairs. I wish I could even just imagine.
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A New Favorite Song

3:10 PM
 I'm Alive Kenny Chesney with Dave Matthews


So damn easy to say that life's so hard
Everybody's got their share of battle scars
As for me I'd like to thank my lucky stars that
I'm alive and well

It'd be easy to add up all the pain
And all the dreams you've sat and watch go up in flames
Dwell on the wreckage as it smolders in the rain
But not me... I'm alive

And today you know that's good enough for me
Breathing in and out's a blessing can't you see
Today's the first day of the rest of my life
And I'm alive and well
I'm alive and well

Stars are dancin' on the water here tonight
It's good for the soul when there's not a soul in sight
This motor's caught its wind and brought me back to life
Now I'm alive and well

And today you know that's good enough for me
Breathing in and out's a blessing can't you see
Today's the first day of the rest of my life
Now I'm alive and well
Yeah I'm alive and well
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No One Promised Life Is Fair

10:20 PM
Life isn't fair. It's just fairer than death, that's all.
William Goldman, "The Princess Bride"
We are a generation of entitlement, a generation that believes that just because we exist we are automatically entitled to a life that meets some arbitrary definition of "fairness" and "justice". Last time I checked, my birth certificate did not come with any warranty or life time guarantee. There were no promises made, no refunds or exchanges offered, and no manufacturers warranty covering any part of the product.  This is life, not a lifetime movie in which everything works out hapily ever after once you use the required number of kleenex for those appropriately emotional moments, moments that are acceptable because you know the end will always be positive. Reality is not a movie of the week. You take what you are given and you have two choices. You can demand that you receive something else, that you exchange or get a refund of sorts and complain bitterly about the injustices of having not received all that you feel entitled to or you can suck it up and deal, living life as it happens and appreciating the fact that in all honesty we are entitled to nothing. The world owes us nothing but we tend to demand an awful lot from it, thinking we are somehow special and set apart. I am frequently told that somehow the way that I live my life is courageous and brave or that I am doing something extraordinary in how I am dealing with all that has happened in my life. I don't see it that way. I never signed up for this, I just happened to receive this body with all of its genetic misspellings and malfunctions. I can waste my life yelling that it is unfair, but that will change nothing. It will not undo what does not work right in my body and it will not guarantee me more time to experience being alive; it will rob me of precious time to treasure life and to make the most out of every single moment. I refuse to allow the things that went wrong to define me or to limit me or to prevent me from living my life. I only have this life and there are no guarantees or refunds or warrantees or exchanges and I do not feel that I am somehow so special that I am entitled to a life set apart from the realities of the world. Sure, it absolutely sucks at times and I get frustrated and overwhelmed and angry. Then I have a good cry if necessary and suck it up and deal because I am still so blessed. This is my life, and I can do nothing other than live it the best way I know how. I don't see that as anything special or brave or courageous. It is just ordinary me living the life I have been given and refusing to let a moment be wasted on false senses of entitlement or pity when they could be spent in joy and celebration and hope and wonder. I can dance and laugh and sing in the rain just as easily as I can in the bright sunshine, and puddle stomping is grand fun.


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Slip sliding away

8:32 PM
I have been pushing myself for the past two weeks or so, with my trip to Virginia and then having to immediately jump back in to my crazy life of medical appointments and such upon my return. While in Virginia I was smart enough to know when I needed to rest and not be too embarrassed to admit that I needed extra rest. Had I been with anyone else I would have kept my guard up and acted like I felt fine, but the friends I was with have seen me at my absolute worst and been there for me unconditionally so I trust them with the good, bad, and ugly of the realities of my life. Something - be it the delightful dysautonomia, the pleasant progressive spastic paraparesis/paraplegia, the lovely lupus, or a fun new friend - is slowly but steadily draining me of energy. Each day I find that I have just a little less energy than the day before and that I require a slightly longer (and I mean I am resting/sleeping for hours in the afternoon and evening) rest each day. It is like a giant tug of war with a monster in my body and I am sliding ever so slowly through muck and slime, unable to get traction. I hate when that happens! Besides, the monster is a bully with a serious attitude problem and he is interfering with my style here! I need to find some high octane fuel to help me yank that rope and send the monster flying into the giant pit of mire and muck and break this pattern of slip sliding away. It is coming up on holiday season again, and I refuse to be sick again this year!! I missed every single holiday last winter because I was so sick, and I want to make up for it this year. Starting with Halloween and going straight through St. Patrick's Day.  I want to celebrate life, hope, renewal, family, friends, love, memories, and all of the blessings in my life. I want to celebrate with the people who have been there for me, who believe in me, who have made this journey less lonesome and frightening and brought laughter and joy to it. I refuse to spend another season of celebration feeling awful, with no energy, and not myself. This is one battle I will not lose.
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1:02 PM
Your result for The Golden Compass Daemon Test...

Multi-Faceted Soul



In a way, you are a truly balanced person. You have a good sense of self, but you have periods of worry and self doubt. You don't like to be alone a lot, but you don't like being constantly surrounded, either. You can be shy in some situations and bold in others. You can tell people how you feel, but you don't wear your heart on your sleeve. You aren't "TOO" anything: You aren't too shy, you aren't too aggressive, you aren't too extroverted, you aren't too introverted. However at any one time you can be any combination of these things.

You tend to adapt yourself to match the situations in which you find yourself. You may be quiet and sensitive with some people, or joking and loud with others. These are all facets of your personality. People tend to perceive you as they want to perceive you. They may even tend to idealize you a bit. Then, when you do something that doesn't fit their concept of who you are (like have an outburst of anger, or a fit of shyness, or make an insensitive joke)they can be shocked and surprised. Does anyone know the real you?

Your daemon would represent your multi-faceted and ever-changing personality, as well as people's tendency to idealize you. He or she would get angry when you did not, be calm and poised when you felt ruffled and anxious, and always be the voice of emotion and reason in your ear.

Suggested forms:
Swan, Elephant, Koala, Panda, Chameleon, Wolf.

Take The Golden Compass Daemon Test at OkCupid
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Always Read the Fine Print

9:20 PM
Tomorrow morning I return to my glorious life as a human lab rat as I undergo testing on my bladder and kidneys to determine what damage, if any, has been done by the fact that my body has decided I do not need to receive the nerve signals from my bladder all the way up to my brain. Apparently I need to learn to read the fine print about these tests before I agree to participate as I am going to end up having two tubes inserted into what I distinctly identify as exits only and electrodes placed on "sensitve areas" to measure nerve responses as well as having my bladder inflated like a water balloon. Oh the sick and twisted minds of the medical world, what will they think of next? I am not a fan of tubes, especially tubes in exit routes, let alone tubes in exit routes inflating me like a human baloon animal so this is going to be a miserable Wednesday morning. This makes the Kidney ultrasound seem like pampering at the spa afterwards! I so enjoyed my vacation from all of this medical stuff, and I am grumpy about having to come back to reality. Starting at 6am tomorrow I have to work hard at drinking clear liquids, but can not eat anything which I am sure will do wonders for my attitude when combined with the fact that I am going to be awake for the third morning in a row at an indecently early time. At least when I was little and had to undergo miserable testing I got bribe gifts of a new book and either a stuffed animal or other small trinket; now that I am an adult I have to just suck it up and deal, not even a sticker or lollipop. I really need to read the fine print because that just seems wrong! ;) Always, always read that fine print!
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12:05 PM

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Imagination: Try It On

1:14 PM
Barbara at TherExtras is having a Halloween Contest, and so while I have a tendency to lose contests I decided it would be fun just to enter. The contest involves writing about the benefits of dressing up for Halloween. I decided to keep it simple and not go into all of my textbooks from Child Development, but I could not resist my stockpile of photos to illustrate my points. :)

As a preschool special education teacher, one of the most beloved centers in my classroom was the "dramatic play" center. It was here with the pretend kitchen, ever rotating stock of supplies for theme play (a farmers market stand in November, a post office in February, a flower shop in May, etc.), and magical mystical dress up trunk that my little ones would be magnetically drawn.





We enjoyed the benefits of explorative dramatic play on a regular basis, in which children are allowed to make choices and explore different aspects of the world around them by taking on roles. They can take on the role of a superhero and conquor their fears, or that of the monster to make it less scary.



 

 

During imaginative play all things are possible, and there are no directions or instructions. The toys, the costumes, the props do not limit the range of the child's thinking but rather encourage thinking beyond the literal and into the world of the abstract and symbolic. Children have the opportunity to enter into play where they are in control, where they can take on the roles of the adults around them and "try them on".



 

 

Sometimes they even reflect society all too well, as with this little guy below who I believe was enrolled in the Britney Spears School of Parenting at the time.


 
 
Halloween is one specific day in which we encourage children of all ages to set aside the rules and to explore the possibilities of imagination, to explore different roles in the world and to think in abstract ways. It is a chance to try on the imagination and hopefully discover that it fits so well that it should be worn the entire year. For imagination is the key to wonder, to delight, to building abstract thinking, and to being able to discover a sense of self. Imagination does not discriminate based on ability or disability, age, gender, or method of communication and so on Halloween, and any days imagination blossoms, barriers fall between children with special needs and their peers as they all "speak" the same language of creativity.







So this Halloween, whether you choose to be a princess, a mermaid, a superhero, or a Purple People Eater, try on your new self for the evening and try on imagination. At the end of the night, when it is time to change into pajamas be sure to only take one of them off!
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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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To read a post, just click on the title for that day's post and you will be taken to the entire journal entry. If you click on the photograph, you will see that picture enlarged.

Wild Olive

Wild Olive

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Creative Victory

This is Me

I am a thirty year old enigma who has defied every expectation ever placed upon me and refused every definition created for me. My greatest passion in life is to make a difference in the lives of children with special needs and their families. As a special education teacher I broke all of the unwritten rules to make sure that my kids received the services they needed and had a right to receive. I have never been so proud to be reprimanded before in my life. Now, due to unpredictable twists in life, I am learning first hand what life is like when you rely upon a wheelchair for mobility. I am a medical puzzle with the pieces slowly being identified and put together, and my medical bills alone could fund a small nation. It takes a village to keep me alive. :) However, I am not defined by the genetic misspellings. I am a teacher, a daughter, an aunt, a friend, a dreamer, a reader, an amateur photographer, a writer, an advocate, a star gazer, a world changer. I am stubborn, situationally shy, quick to use humor and wit to make others laugh or cope with a situation, sarcastic, fiercely independent, giving, compassionate (sometimes to a fault), protective of those I love, defiant of arbitrary boundaries, perfectionistic, self conscious, self assured (yes you can be both!), articulate and occasionally dramatic. And that is just what I could fit in two sentences! :)

Who's On First, What's On Second, I Don't Know! (Third Base!!)*

Simple Vocabulary Definitions for those who may not speak fluent medical :)

Undiagnosed Progressive Neurological Disorder- This is the diagnosis that is believed to make everything else fit together. It explains my frequent infections, my muscle weakness and dystonia, my dysautonomia, my cardiac issues, my inability to regulate blood pressure, my dysphagia, my ataxia, my severe fatigue, my extreme nausea, my gastrointestinal dysmotility and IBS like syndrome, my unbelievable migraines, my sensory changes in my arms and legs, my vision issues, my hearing loss (so much for blaming medication), and so much more. Going back to infancy and childhood, this would explain the severe apnea, the significantly delayed motor skills, the reason why I could never keep up with my peers in physical activities, the neurogenic bladder, the malfunctioning thyroid, and my frequent illnesses and vomiting. This is the diagnosis now being used since the DNA testing for Mitochondrial Disease came back odd and I can not afford the expenses of a workup at the Mayo Clinic. We are treating symptomatically.

Pan-Dysautonomia- "Pan" means that it impacts many different systems of my body, "dysautonomia" is a failure of my autonomic nervous system or the part of my brain that does all of the automatic things that do not require conscious thought like telling your heart to beat, regulating your blood pressure, adjusting your body temperature, maintaining balance in space, digesting food, hunger and thirst, etc. It is believed that I have had this from birth based upon my history of symptoms, including severe life threatening apnea as an infant, but the cause remains elusive at this time

Dystonia- abnormal muscle tone and spasticity, including painful spasms, that primarily impacts my feet and lower legs and is now starting to be a problem in my back

Ataxia- difficulty maintaining balance and coordinating/executing movements

Dysphagia- difficulty swallowing due to any number of causes including muscle weakness and poor muscle coordination

Adipsia- the absence of a sense of thirst



Other Medical Issues- Lupus Anticoagulant (autoimmune disease that causes me to tend to form blood clots and has already caused two deep vein blood clots and one mild stroke), Migraines, unknown connective tissue disorder, abnormal gastric motility, allergies, history of v-tach and severe sinus tachycardia, changes to my echocardiagram that include leaking valves and a new murmur, low blood pressure, ataxia, untreated PFO (small hole in my heart that increases the risk of stroke), chronic lymphadema in my left arm, Hashimoto's Thyroiditis, Narcolepsy/Idiopathic CNS Hypersomnolance (believed to be a result of the dysautonomia and my brain's inability to regulate the sleep/wake cycle), mild hearing loss, malformed optic nerves, polycystic ovarian syndrome, pernicious anemia, vitamin deficiencies


* Title comes from an old Abbot and Costello routine that I chose to memorize in 6th grade and absolutely love.

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