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

Traditions: Teaching the Next Generation

6:34 PM

We have a long standing family tradition of wrapping paper fights at our family Christmas get together. It was in existence as far back as I can remember. We have done our best to teach the next generation, and it seems we have taught them well indeed. The littlest family member took the opening shot this year!
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My Grown Up Christmas List

11:53 AM

Dear Santa Claus, Kris Kringle, Christkindl, St. Nicholas, Sinterklaas, Mikulas, San Nicolo, Pierre Noel, Father Christmas,

I am quite certain that I am trending more towards that naughty list than the nice list, especially if swearing and sarcasm are taken into consideration, but I decided to take my chances and write you my grown up Christmas list. If I have been too naughty, instead of bringing coal could you please deliver the equivalent amount in barrels of crude oil - they trade better on the open market. If I have tipped over into the nice category, below are some suggestions of things that would be really great to receive this year although they may be a little challenging to wrap up and top with a bow, but that is why you have the Elves working in your sweatshops year round. Don't worry, there are no labor laws for Elves yet so you are in the clear.

1) I would like a hippopotamous for Christmas. Preferably a baby one named Ethel. 
2) I would like a can of Stupid-B-Gone to be used in situations where ignorance can not be corrected by education.
3) I would like snow and ice tires for my wheelchair. You know about snow. Now try steering on that crud with thin wheelchair wheels, propelled by metal push rims in subzero windchills.
4) I would like for my buddies and kids with special needs to be more than tolerated in society but to be accepted and appreciated. I tolerate lima beans when I am served them, but that certainly is different than accepting an offer of a new food for dinner and appreciating a homemade three layer birthday cake with gorgeous decorations. 
4. I would like my body weight in chocolate. All organic and grown by regional farmers, in an assortment of flavors including dark chocolate, milk chocolate, white chocolate, and truffles. 
5. I would like for money and health care and food to be more equally distributed in this world so that no one dies because of hunger or a preventable and easily treated disease. No child should go to bed hungry, wondering if and when they will eat again and where there is such a thing as clean water of what a home is.
6. I would like a disco light for underneath my wheelchair because if people are going to stare I want to rock it out. 
7. I would like an end to killing one another in the name of God. If we all claim our God is a God of peace and love, how can we then kill in His name?
8. I would like to have enough of everything, but never so much that I forget to appreciate all that I have. Enough love, enough joy, enough peace, enough hope, enough grace, enough mercy, enough providence, enough success, enough trials, enough learning, enough friendship, enough miracles, enough laughter, enough memories. I would like to never take forgranted all that I have been given.
9. I would like enough for all of my loved ones, my friends and family, those who share this journey with me and provide me with support and laughter and encouragement. 
10. I would like a diagnosis if you can find one of those laying around.

Thank you!
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The Christmas Menagerie: A Well Worn Tradition

11:26 PM
 Note: This is NOT my Nativity scene. Mine is way more rough around the edges than that. Plus, what is up with Jesus being blonde and having blue eyes? Seriously!!

In an old cardboard box that replaced the shoe box used up until last year when it finally wore through the bottom I keep one of my familie's most precious Christmas traditions. It contains the assorted pieces of a nativity scene that has been my responsibility to arrange for display and tend to since I was about three or four years old. I took this responsibility very seriously as a child and often spent hours arranging, then rearranging, then acting out the scene before rearranging yet again the staging of the nativity. But this cardboard box nativity is special. It is absolutely, undeniably, certifiably one of a kind. It is not so much one set as the accumulated pieces and parts of numerous old sets combined together as parts and pieces went missing. So Mary and Joseph are from one old, handcrafted set but Baby Jesus had to be replaced last year after suffering a severe compound fracture to his arm and some skull lacerations when making a dive out of the manger. We have four wisemen instead of the traditional three, because those are how many are left over from all of the sets and I can not choose one to leave out. The wise men are in various scale sizes, making one look like he has a serious growth hormone problem and another as if he is from the same tribe as Goliath. I figure my wise men bring Gold, Frankensence, Myrrh, and the one thing every new parent needs - free diapers! Then there is one shepherd with a sheep and a free standing sheep of a slightly different shade of white paint...he's been rolling around in the mud. For the ambiance there is a single cow remaining and a single donkey (well, we call it a donkey but it could be a horse I guess...who would invite an Ass to the birth of Jesus?). The angel is missing the gold from her wings and her halo is chipped and dinged. Finally, there is a so-not-proportional bright green wooden pine tree with snow that I made when I was about eight years old at Church and insisted must join in the merriment. My nativity has some character to it, it has been around the block and been knocked around by life, it has been pieced together from pieces and parts that otherwise would have been thrown away, and it has been given a place of great honor every year. I love the imperfections and would have no idea how to set up a perfect, everything matches, nothing is damaged nativity. Just like I love the imperfections in my life and would have no idea how to live an absolutely perfect, unscarred, unmarred, undamaged life. In both the nativity and my life, the quirks, the marks from wear and love and from little hands holding tight, the collection of pieces that failed to fit in  and so were supposed to be discarded, the journeys from home to home, the ragtag menagerie is beautiful in my eyes. Creating that magical scene is something I look forward to every year, especially if I get ahold of some spray on snow, glitter, and straw/hay! Although this year I hope we can make it through the season without any serious trama, although I do have that spare wise man who can step in as an understudy.
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Bah Humbug!

8:25 PM

Christmas is usually one of my favorite times of year, with the glittering lights and the decorations and the excitement about giving to others and the celebration of Christ's birth. This year, not so much. I am definitely not feeling the Christmas Spirit. Last year I was all about everything holiday because the year before I had been so sick that I missed out on the entire holiday season - every holiday from Halloween to Valentine's day. This year I am at a different point in dealing with the massive changes in my life - if we were to refer to the Kubler Ross stages of grieving I am alternating between angry and depressed with days of acceptance. I really want my old life back - if that could arrive under my Christmas tree neatly wrapped in a package and tied with a bow I would be the happiest person on Earth come Christmas morning. At first I tried to force myself to go through the motions and engage in the traditions and make myself feel happy whether I wanted to or not. Yeah, that went as well as it sounds. So now I have given myself permission to feel however I feel and not feel ashamed or guilty about it. There will be no homemade christmas cards this year, and it is debatable whether I will send out any Christmas cards. I have not listened to a single Christmas Carol, other than those playing in stores, and I may choose to keep it that way or I may rock out to Sugarland's Gold and Green. I am putting up a small Christmas tree this year but it will be a low jey event and that will be about the extent of the decorations. It is going to be a low key, low pressure, take it as it comes, celebrate the things that really matter Christmas. And this year I am okay with that.
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Botox Round Two and Fun with Neurologists

10:07 PM

The day before Thanksgiving I was lucky enough to have a double schedule of a standard neurology appointment to be followed by Botox injections from the Movement Disorder Specialist Neurologist. I arrived early for the first appointment, that with the general neurologist. I am not sure why I bothered, as she has yet to ever even manage to be on time let alone early in the year or more that I have been seeing her. So I waited, and waited, and waited. Finally, just when I was due upstairs in the Movement Disorder Specialist's office she walked into the room. Now her office knew I had an appointment with her colleague upstairs at a specific time and chose to keep me waiting downstairs and finish that appointment first. This comes into play later. Her big revelation is that I am far too complex to receive care under a general neurologist anymore, and she wants me to receive care for the dystonia from the Movement Disorder Specialist and for the Dysautonomia from another Specialist and to try to get to the Mayo Clinic if I ever get off of their waiting list for the waiting list. I waited over an hour to be told you have no idea what to do with me? Seriously? And you want my copay for this too?? She did order a bunch of labs because I have further loss of sensation and proprioception in my legs and feet which is strangely mirrored pretty closely in my arms and hands. By this point I am 40 minutes late for my appointment upstairs with the Movement Disorder Specialist for the Botox so my chart is shoved onto my lap and I am told to head directly upstairs, do not pass go, and do not dream of collecting any money.
I arrive in the office upstairs as fast as I could wheel, hand them my chart, and am asked very coldly if they were running late downstairs. Um, no, I decided to go out for drinks between appointments. Duh!! I was asked this same question no less than three times by every nurse, nurse practioner, and even the doctor. Apparently what they wanted me to do was leave downstairs, come upstairs at my appointment time, and then go back downstairs to be worked into the schedule. Great, I would have done that had anyone communicated that to me. So it was a rushed appointment, which I generally am not fond of when it involves long needles and my body. The Botox injections were less painful at the time of injection than last time, but more painful in terms of aching muscles later in the day and over the next couple days. I also got a weird headache right after the injections this time. I asked the Movement Disorder Specialist a question that the neurologist had fielded to him, and did not particularly like the answer I received. Lately I get what feels like the same increased tone in my legs in my lower to mid back. When this happens if I am standing or attempting to take steps with my walker it is very difficult if not virtually impossible for me to move my legs (I can move them a little better if lying down). He feels that this indicates that there is something going on involving my spinal cord, but since I have been imaged repeatedly, and my insurance charges a small fortune for any type of scan (Damn Green Cloak and Green Dagger) we will just watch it for now and see how it progresses. Oh fun!! And to test the progression of the sensory loss another round of EMG testing may be in my future. Santa, that was NOT on my Christmas list!!
Other than having to make an appointment for a check up with my internal medicine doctor, who is now holding my prescriptions hostage until I see him as it has been too long between appointments, I should have a decent stretch of doctor free time. Now if only my back would stop hurting, I might be able to see how much of a benefit I get from my new leg braces during peak Botox effectiveness!!
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Stone Soup

10:15 PM

Every year as Thanksgiving approached, I skipped over the traditional lessons on Native Americans and Pilgrims for my preschoolers. We were still working on the time concepts of today and yesterday and tomorrow, let alone something that happened hundreds of years ago. Instead I focused on the functional and meaningful skills and messages of the holiday of working together, sharing, and celebrating what we have. So every year I taught my kids how to cook soup from a stone. We used the book Stone Soup, usually a newer version as I disliked the soldiers in the original version, and engaged in a multitude of activities that required working together. The best, and favorite, was cooking our own stone soup. It began with a stone that I had boiled for atleast an hour at home the night before, and some vegetable stock. Then each child brought in an ingredient the day before our feast. The children used plastic or safe butter knives to cut up the vegetables for the soup with assistance as needed and then added them to the pot one by one. Due to cultural, diet, and other issues we stayed with a vegetable soup that could easily be pureed. I then took the soup home that night and cooked it until the vegetables were soft. The morning of our Stone Soup feast, I decorated the classroom with Christmas lights over the tables and paper lanterns, and tablecloths for the children to decorate, and special "fancy" place settings. The soup sat on the counter staying warm in a crock pot. We then made biscuits, cut up fruit, and prepared pitchers of juice to set out at our feast table. The focus was on how we could not do this alone, but when we each added something important we had the perfect soup and the perfect feast. My kids really seemed to understand this and were excited to see "my carrots" and "Lucy's potatos", and they were enchanted by how we managed to make soup from a stone. Each child got a "magic soup stone" in a decorative bag to take home at the end of the feast so they could make Stone Soup with their families.
My life is a lot like that stone soup that I made with my little ones. It started out two years ago with something ugly and jagged and seemingly worthless, a rock of illness and disability. I cleaned off the rock and did what I could with it, but it was still a rock. Then one by one incredible people: family, friends, and people who became friends came forward and offered gifts that only they could give. They gave me hope, they gave me understanding, they gave me laughter on days when I wanted to just cry, they gave me reassurance, they gave me a sense of belonging, they gave me courage, they gave me back my sense of self, they gave me love, they gave me joy. On my own I can not make it, but with all of the unique gifts that my friends and family have given to me something wonderful and unexpected has been created, something nourishing and sustaining and greater than the sum of its parts. Thank you for being part of my community, thank you for bringing what you do and adding to my stone soup. Two years later I give thanks that what was once just a ragged, jagged, ugly rock is now surrounded by blessings and lessons and hope. I give thanks for you.
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The Talking Drum

11:52 PM

As a teacher I was never beyond using any creative, unusual, unorthodox and flat out one of a kind system to help a child learn to communicate. Duke was a just turned four year old in my preschool class who had a generally cheerful disposition, a brilliant smile, an absolute love for music and anything with wheels, and significant delays due to autism. He did not imitate, he did not vocalize speech sounds, he did not use signs or picture symbols and he did not take kindly to anyone who tried to place these demands upon him. And when I say he did not take kindly to it, I mean that this four and a half foot tall four year old who was built like a line backer went into full combat meltdown. He once attempted to break my classroom window, and I was astonished by the durability of window panes from the 1960s.
I noticed that Duke would sit transfixed during music activities, especially activities that involved instruments. So I began a "make it up as you go along, but take data to save your arse" language program. During direct instruction sessions, I would have him sit with me, and between us would be a drum. I would say a word that I wanted him to imitate, and then tap the rhythm of the word out on the drum. Then I would say the word again and guide him through tapping out the rhythm. If the word was a feasibly small object I then went through tapping the real object on the drum to the rhythm of the word and having him do the same. This worked best with highly preferred objects like toy cars and trucks, a spoon (to get a bite of pudding), a cup (for a drink of chocolate milk), and for fun sing song turn taking activities ("Hello Duke" "Hello Teacher"). I honestly had no idea if this would work or if I would have a proven failure of a communication education system. For Duke, it clicked. He heard the rhythm and music of the words and associated them with the objects.
After about a month I could hold Duke's most favorite item, a toy car, out of his reach and wait for a vocalization without the drum (we had practiced and learned it there). He would try every behavior pattern possible to wear me down and convince me to just surrender and give him the car. At first it took an average of 10 minutes of a tantrum before he would make eye contact and in what I can only imagine was pure disgust say "car". This soon spread to bubbles, light (for a light up toy), cookie, and so many more words. His vocabulary grew steadily, and the average time of negative behaviors before he would vocalize a word got down to as low as an average of 15 seconds with many spoken words without any negative behaviors.
The drum then became a way of introducing language in a social turn taking situation. I speak/drum first and then you answer/drum back. The rhythm of speaking to another person. I had never appreciated the music in a conversation before, but as we tapped out the beat I heard it in all my conversations and in the rhythm of my every day language. I could give him all the words in the world, but it was not until I found the beat that he was able to utilize them and discover language. Now even when I listen to classical music, or jazz, or any music without vocal accompaniments I still hear a language and speech in the talking drums.

* Photo courtesy of istockphoto
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30 Days of Giveaways

7:13 PM
Ni Hao Y'all

Check out Ni Hao Y'all and their amazing 30 days of Giveaways!
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12:45 AM

I adore words, finding in them an almost magical power that extends far beyond the representation of concept or emotion. There is a lyrical, musical, ballet dance to words and the sound and feel of the word is just as critical as the intent of the word. Discombobulated has long been one of my favorite words, ever since I first tasted its weight and tone as a small child. Nothing else quite captures the state of jumbled up, tangled, frazzled, out of my own control, not sure which way is up or down as being discombobulated. My reason for not writing anything in a long time is that I have been living in a perpetual state of discombobulation.

My dysautonomia has become significantly more active as the fall days turn colder, and I do not know if that is just a coincidence or if I am in for a long winter.I have been held hostage by my body all month thus far inside of the house, and I am getting very tired of spending my days on the couch or curled up in my bed. Tomorrow I plan on forcing my body to suck it up and deal with a short outing to Target as I am out of some of my medications and they don't deliver (I got spoiled by the old fashioned pharmacy that delivered in the smaller town I used to live in!). Emotionally I tap dance along the spectrum from anger to depression (more like mourning or grief for what I lost) to days of acceptance. I should have paid better attention during those dance lessons as a child as I keep getting the steps wrong and ending up all tangled and befuddled.

I can not believe that it is already time for me to need to get working on making my Christmas cards, and I don't even have my craft table officially set up in my bedroom. Thankfully this year's planned card is simple in design and should be an easy assembly. I had considered doing homemade Christmas gifts as well but that is so not happening this year. Maybe next year if I start in August I will have a prayer of getting done in time.

I have my next round of Botox injections scheduled for the day before Thanksgiving, and I am hopeful that this appointment is not cancelled (the first one for this round was cancelled as the doctor had to go out of town). It has been an unpleasant process to gradually regain the spasticity that was taken away by the first round of injections and I much prefer the range of motion and comfort that I had following the injections. I also see my neurologist on that day, and we have many details that need to be discussed including what symptom management will look like since it appears the search for a diagnosis has been surrendered and if this new back pain is progression of the dystonia and how I can stay hydrated to prevent the recurring bladder/kidney infections when I have absolutely no sense of thirst (thanks to the dysautonomia).

In a completely random note, it has already snowed here. Excuse me, but I don't remember placing an order for an early winter or cold weather. Thankfully the little snow that stuck melted quickly the next day. Snow sucks when you are in a wheelchair and the cold sucks when you can not regulate your body temperature. I love looking at the snow, but I hate having to go out in it when it is windchill negative freeze your breath. I still want to find the genius who thought that metal push rims would be a great idea for a wheelchair that would be used in a Northern state with frigid winters. It is like that scene in A Christmas Story when the kid gets his tongue stuck to the pole, only with my hands on the push rims. I had to buy a new, very warm winter coat as the coat from last year did not fit and matching hat, scarf, and gloves. Unfortunately, with my KAFOs, there are no winter boots that I have found that fit over them so I have to be very, very careful transferring in the winter. 

I will hopefully be back soon to write something more creative, more insightful, and more entertaining. I am writing this tonight as I try to lull my brain into a relaxed state during an annoying bout of insomnia. Therefore, I promise absolutely nothing in terms of comprehension or logic. :)
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The tags that rub

2:11 PM

As a small child I was hypersensitive to the tags in my clothing. My mother had to painstakingly remove every last reminant of any tag from every single item of clothing before I would agree to wear it. I would hear her grumbling as she picked at seams with sewing scissors after every back to school shopping excursion. But those tags in something new were intolerable to me, I could continually feel them grating against my fragile skin and what to many would be a light touch was magnified to torture. Yet in old hand-me-down clothes that had been through the washer countless times and the tags had been softened with age I did not demand that every tag be removed because they had been softened with time. They were tolerable because they were in something broken in, something that had taken the abuse of the world and worn away the hard edges. It took time for the raw scraping to transfer to a soft and gentle touch; time and wear and use.

I realize after reading comments to my last post that it may come across that I have a huge chip on my shoulder or extremely high expectations when it comes to how others act towards me in relation to my disability. Using a wheelchair, using leg braces, not being able to walk independently - those are all brand new tags in my life. After two years they are not as intolerable as they were in the beginning but they are still no where near as soft and flexible and gentle as the other tags in my life that I have lived with for so much longer. I admit that it stings more when I feel someone react to my using a wheelchair because that tag is still grating on me. I use humor as a huge coping mechanism, and that is why I frequently just laugh at the situations that feel awkward or out of place. I also know that because these tags are not worn soft with time, I need to keep in my heart and mind the fact that most people have good intentions and just generally have limited experience with individuals with different abilities.

But I do also hold society to a high standard, because if we do not have high expectations than nothing will ever change. I will gladly educate and advocate. The inclusion of individuals with disabilities in our mainstream society has come so far, but has so very far to go. Ignorance is not an excuse, as it was not an excuse during the Civil Rights movement, but an opportunity to educate. Sometimes I need to remember that it is an opportunity to educate and ignore the rubbing of the tags. Ignorance is a tag that rubs raw, but it is one that is only softened by education and by teaching those who "don't know any better". It is showing the world what it means, and does not mean, to have a disability. It is working to create a world where having a disability is not equal to having a handicap*.

I hope this post makes sense. I tried so hard to explain what is on my heart in a manner that would be easier to understand.

* A disability is a difference of abilities as compared to a norm. A handicap is when a difference prevents the individual from being able to engage in a desired aspect of society. So it is possible to have a disability but not a handicap, and technically to have a handicap without a disabilty. In the game of wheelchair basketball, being ambulatory is a handicap because you are not used to using a wheelchair and you will struggle to keep up and not end up as roadkill.
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And The Children Shall Lead Them

1:36 AM

I was waiting in line to pay a small fortune for my new KAFO leg braces when I felt a small hand pulling inquisitively at my wheelchair. Before I could turn around, a horrified sounding adult snatched the wee little hand away and admonished loudly "Avery, NO! Don't touch that!" Personally I like it when children are inquisitive about my wheelchair and braces and assorted accessories, so I was a little taken by surprise by the harshness of the mother's reaction. I turned slowly around and caught the deep brown eyes of a child no more than two caught between wide eyed wonder and confusion.

With a truly joyful smile on my face I stared at his Tom Sawyer imp of a face and introduced myself with a resounding "Hi!"
My greeting was returned with a bubbling "hi" and then he decided to get brave. Pointing to my wheelchair he asked "Wheels?!?"
"Yes, my chair has wheels on it. The wheels help me go." I then proceeded to do a few basic maneuvers like a spin and a back tilt much to the delight of Avery.
"Chair has wheels!!!"
"Yes, like a bicycle has wheels."
"Chair has wheels. Bicycle has wheels. Go wheels!"

At that point Avery had decided that this whole wheelchair thing was pretty darn cool and had firmly attached himself to the side of my chair just in case I tried to escape without allowing him a test drive. He was so firmly attached that when the office staff offered him a piece of candy from the creepy germ ridden community candy bowl, they asked me for permission instead of his mother. I quickly cleared up the fact that he did not belong to me, even when he opened his mouth wide to show me the partitally chewed orange pumpkin candy to show me that he had "candy" then "'unkin candy".

By the time Avery left, he had thoroughly explored my wheelchair and asked all of the pertinent questions in his two year old mind. I was no longer a "do not touch" but instead a person with a really cool way to get around. He was fascinated by my wheelchair, but once he got his questions answered and figured it out to his satisfaction he was over it (other than really wanting a test drive) and on to talking about more important things like the pumpkin candies he managed to cute his way into and his new shoes. There was no reason in his mind that my using a wheelchair was abnormal - his mother came close to teaching him that lesson, teaching him a fear of those with differences, fostering a sense of prejudice and discrimination that does not naturally exist in children. I love the way children react to my wheelchair, their honesty and their directness. I love how they get to the point, ask their questions, figure out how it works, and then it just becomes a part of their norm for the person and they go on to other more important things.

In the same arena, my six year old niece also amazes me with her total acceptance and the way she interacts with the fact that I am now using a wheelchair. She asks the most amazing, direct and unfiltered questions and I love her raw honesty and desire to learn, to know, to comprehend. She also really enjoys exploring my wheelchair and figurng out how it all works. We still hang out and play together, and I am still her silly Aunt and she is still my Little Bit. When we are out somewhere she tries so hard to be my helper by pushing my chair or by making sure that people get out of my way, but she also loves when I go downhll and we can race one another. In her drawings of me now my wheelchair is always included just as a part of who I am, and this complete acceptance is amazing to me.

These kids are especially amazing because so many adults can not get beyond the wheelchair to see the person that I am, to recognize that there is more than a disability sitting there. Children do not learn to pity those who have disabilities until they are taught to do so, they do not see a "no touch" sign until it is placed for them, they do not fear differences until someone makes them fearful.

**Photo is of the most amazing almost eight year old boy I have ever had the honor of knowing, one who taught me more than I could have ever taught him.
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Warning: Exposure to Stupidity May Cause Toxic Side Effects

1:19 AM

I couldn't sleep - probably something to do with the two, 2.5 hour naps I took today- so I decided to do a round up of some of the best of human stupidity that I have encountered recently.

At the Target Pharmacy counter a woman has spread a dress in a dry cleaning bag, a Victoria Secret bag, a Bath and Body works bag, and her purse. I am waiting patiently behind her to pick up my prescriptions as she pays for her meds and gathers up her stuff. Then we have the following conversation:

Her: Oh, I am so sorry, I am completely in your way!
Me: Don't worry about it. I am usually the one getting in other people's way, its a gift, so I totally understand.
Her: Oh yeah, because of your wheelchair.

Excuse me? Does she want some Ketchup to go on that foot sandwich? Did she just tell me that I get in the way because of my wheelchair?

I called the local bus company to schedule a special handicap accessible bus for direct transportation.

Bus Operator: Are you in a wheelchair?
Me: Yes, I use a wheelchair.
Bus Operator: Do you have a disability?
Me: Nope, the wheelchair is just a fashion accessory.


I had to complete a urine analysis for a bladder infection that is refusing to die. After giving me the very familiar cup to pee in, I had the weirdest exchange with the lab technician.

Tech "Okay so how do you want me to help you?"
Me "Uh, thanks but this is definitely a one person job. I have it under control."


Riding on the bus I had noticed an older woman staring at me, but I figured if she had nothing better to do with her time then she was welcome to stare. My legs were hurting after having been strapped in for a few hours, so I leaned down and unbuckled my foot restraints (I am not wearing braces at this time as they are in the process of being made) and allowed my feet to rotate into their natural position. As my legs and feet moved I heard a gasp from the old woman and looked over to see her turning eight shades of white. Apparently she had assumed my legs did not move and so when they moved it startled her meddling little heart half to death.


Again on the bus, I had the following exchange with the driver.

Driver: "You, the wheelchair, where are you going?"
Me: "You, the legs and loafers, I am going to X."


These are just the highlights that I can remember. It is a dangerous world out there, and apparently I bring out the stupid in people. :)
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A Time to Mourn

10:08 PM

This time of year seems to be a very melancholy, introspective one for me. Last year I thought it was because it was full of all of the first "last times" - a year since I taught my kids, a year since I got sick, a year since I was able to hike, a year since I walked independently, a year since I became dependent on a wheelchair, a year since I lost so much. Apparently those anniversaries are just as powerful the second year as the first because I started to get into a funk as October began, and it was the beginning of October when I really started getting sick two years ago. I feel the old emotions creeping back in - the frustration, the anger at my body for betraying me when I had everything I had ever wanted in life (a job teaching special education, awesome friends, and was ironically the healthiest I had ever been before this happened with hiking and teaching all day and doing yoga), the aching longing to have all of the unanswered questions answered and to give this monster a name so I can call it out into the light, the grief for what I lost. Now it sounds like I am sitting around feeling sorry for myself and that is absolutely not the case, but when I least expect it I find these old feelings creeping around again when I thought they were long gone. I guess there is a season to everything and this is my season to mourn. Soon enough it will be my season to dance and celebrate and be joyful. Even in the mourning I am thankful, for in order to feel loss I had to have had some incredible experiences and opportunities and I am forever thankful for them and for the life I have been given. Considering I was never supposed to live beyond my first birthday, every day is borrowed bonus time.
I have another entry that I want to write soon, but this is what came out when I sat down to type so I am going to go with it for tonight and save the other for another day this week. This is more real to what I am experiencing now, a real image of the fact that there are still seasons of mourning two years out and probably ten or twenty years out just as there are seasons of celebration and seasons of joy and season of dancing.

* photo courtesy of iStock Photo
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Notes from the Box Piles

12:52 PM

I am officially moved into my new apartment that I am sharing with my mother, and the apartment is awesome. However, moving is perhaps one of the most frustrating and exhausting processes on earth. We have boxes stacked in every room in the apartment except the bathroom, and our goal is to have everything unpacked and put away and organized by Christmas. What is scary to think about is the fact that I could literally throw away every single box I have that is still packed, and other than missing my journals, I  would have every single thing I *need* and could replace anything else easily. Needless to say, as I unpack I am very carefully sorting through items and either donating or throwing away any items I have not used in the past 4-6 months. Possessions have never been a big deal for me, and I am driven in life by making memories and interacting with others, not with acquiring things. I am actually most happy when I have just the basics that I need and a few wants.
So when we moved into the apartment we apparently forgot to make some sacrificial offering to the toilet gods because on the second day the toilet made a strange sound and then proceeded to do a very realistic impersonation of Old Faithful. Water was not running over the edge, it was erupting from the toilet. Before I remembered the wall shut off valve it had flooded not just the bathroom but the entire hallway. Maintenance showed up 30 minutes after we called carrying nothing more than a plunger. Um, Dude, we're gonna need a bigger boat. An hour later, the toilet is precariously "fixed" and he has made an attempt at the flood with a wet dry vac and we go to bed with fans blowing in the hallway to dry the carpet. I am especially thankful that I choose to get carpet without padding to make it easier to maneuver my wheelchair because that makes this mess a lot less of an issue. Three days later I have prayed over the toilet and flushed it, and it is refilling when I hear a sound that I can only describe as the sound one would expect to hear if the bowels of the earth opened up and proceeded to suck down Niagra Falls as the toiled completely drained of water. Apparently somewhere along the six stories of pipe there was an obstruction, and that god awful sound was the sound of it breaking away. Either that or the toilet gods decided we had paid our dues and removed the curse. I still pray before I flush the toilet and try not to get too close to it unless necessary.
Amidst the chaos of moving I also had my follow up appointment for the Botox injections to determine how well the first round of injections had worked and plan for what the next round will target and such. It was a very short appointment, which frustrated me as I drove 90 minutes each way just to talk to the doctor for 5 minutes - no exam even. I am getting new braces made as my old ones never fit right and now totally do not fit right since I have achieved a more normal position and the ability to have my legs positioned and held in even more normal positions. This time I am getting KAFOs, or Knee Ankle Foot Orthotics, because when I stand and walk I lock all of my joints for stability. The problem with this is that I have joint hypermobility and to lock my knees I actually hyper-extend them which is causing pain and throwing me even further off balance. So the KAFOs will provide the locked knee support without allowing me to hyper extend my knees.
Right now I am temporarily set up with the internet running from the main phone line in the middle of the living room because the phone guy failed to install phone service in all of the rooms of the house when he came out, and the soonest they can come back out is Tuesday. So my internet access is still limited as it is a hassle to finagle it out here. Which is okay because I have not been feeling up to doing much more than working with my mom on a box or two a day and then resting. I don't know if I have some sort of infection or if the dysautonomia is just warning me that I have been pushing too hard for too long.
I will try to update from the box piles again soon, for all three people reading this LOL :)
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just moved and hooking up

12:07 PM
just moved and hooking up computer is low priority compared to mountains of boxes so will be offline for a while.
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Botox: 2 weeks later

10:50 PM

Two weeks. The magical number for maximum effects from the Botox injections in my legs to be seen. I still have a large bruise from one of the injections that apparently went awry, but it is slowly fading from angry blue black to shades of purple and yellow-green. So how much can change in two weeks? Well, a lot. The spasticity in my legs is reduced and my feet at rest are much closer to a natural, neutral position. When I wear my braces it is no longer a wrestling match to try to get my feet into them and I can stand with my feet facing forward for short periods of time (before the knee and hip rotation kicks in and turns them). My feet are the closest to being flat on the ground that they have been in almost 2 years. Toes are unchanged, which means they are still curled tightly under and unable to be straightened. But perhaps next time with the injections on the bottoms of my feet (yikes!) we can get my feet fully flat and my toes to relax some. It is hard to tell how much is permanent contractures and how much is still just spasticity in the toes. Side effects were not too bad, but I do have increased weakness in my legs and have to be very careful when doing any weight bearing that I am safely supported and when in my wheelchair I still must use the straps on my footrests to hold my legs in proper alignment. Other than that, I felt kind of generally yucky for a day or two (could have been an autonomic response to the trauma of the multiple injections) and bruised and that was it. Definitely worth the short term pain for the longer term gains!!!
Just in an unrelated note, the Dysautonomia has been kicking my butt recently and I am currently living on soggy cheerios and green tea and Zofran and headache meds and muscle meds and BP meds and sleeping, sleeping, sleeping.
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Human Pin Cushion

12:08 AM

On Wednesday I had my first appointment for Botox injections. I knew just enough going in to be dangerous to myself, but not enough to be well informed and relaxed. Almost all of my information came from my experiences as a special education teacher, so it was framed through the pediatric framework. Knowing that this is a process done under anesthesia for children, I was a bit anxious about how much it would hurt. The reason it is done under anesthesia for children is their difficulty remaining still and the trauma of multiple injections into the muscles. Using the EMG machine with two electrodes and a special needle, the doctor targeted specific muscles in my lower legs that are responsible for rotating my feet inward and pushing them downward. I received somewhere between six and ten injections per leg with a small dose given per injection. I remained seated in my wheelchair for the process and simply removed my braces and socks. I was pleasantly and delightfully shocked by how much less it hurt than I had anticipated. I was all ready and prepared to swear creatively, since Mythbusters demonstrated that swearing increases pain tolerance by 30%, but I never even needed an old fashioned "Ouch!"!! Not that I am saying it was particularly fun, but it was no where near the pain I expected. One injection did cause significant bleeding and a large bruise formed with a golf ball sized lump underneath, so it looks like I am trying to shoplift from a golf pro shop via a hidden pouch in my leg. My legs are sore and achy, but nothing more than I would feel after expending myself too much and overworking the muscles. I go back in four weeks to have the doctor assess the impact of the Botox injections, and then in 13 weeks for the next round of injections. Based on the muscles response during the injections, the doctor thinks next time he will need to inject the bottom of my feet to attain the best possible results and get any results from my toes. According to our conversation, those particular injections "hurt like hell" so I am sure it will be an adventure. I did point out to the doctor that none of this hurts him, and he was quick to point out that if he feels any pain during the procedure something has gone wrong. I have two words buddy - voodoo doll LOL :) So now I wait - for the bruise to go away, for the aches to go away, for the results to begin to appear (any time within the next 2 weeks I should see the effects). Just the fact that this offers a chance to get relief from the tight muscles and the twisted feet makes it worth the experience, let alone if it actually works!!
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Twenty Nine Years

10:39 PM

Tomorrow is my twenty ninth birthday, a birthday that twenty nine years ago every specialist at Children's Hospital agreed that I would never live to see. They had such little faith that I would survive to see my first birthday that they encouraged my parents to leave me at the hospital to be cared for until my death and go home to have another healthy child. I am forever thankful that my mother and father, facing those circumstances, refused to give up on me. I am forever thankful that God had far greater plans than those doctors could see, plans that have included a life rich in treasures and adventures and the joy of loving others and being loved. I am thankful for the wisdom of twenty nine years, and sometimes what seems like a lifetime more, and the opportunity to be educated by some of the most amazing children God ever created. I am thankful for learning early in life to live in each moment and to take nothing for granted. I am thankful that I also learned early the true measures of wealth in a life, and that none involve dollars and cents. I am thankful for my abundant blessings and for another year to live, to laugh, to cry, to share, to dream, to hope, to pray, to make memories, to grow, to learn, to love.
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Summer Hibernation

4:52 PM

It has been a while since I have posted anything. Most people hibernate in the winter, and living in the great frigid north I am not opposed to that tradition in any way. However, thanks to the failure of my body to regulate temperature, I also have to hibernate inside with the blessing of air conditioning on summer days that are too hot. This summer has been unusually hot and humid, meaning that my ability to get out and do anything has been greatly limited. Add in the total lack of access to transportation unless someone decides to take me somewhere and I am a house hermit. But not for long. So long as everything works out as it should, in just over a month I will be moving in with my mom to a two bedroom handicap accessible apartment that is in the bigger town with a fully accessible public transportation system that allows me to be independent and go wherever I want whenever I want. I will also be able to get my wheelchair into the bathroom (bonus!), and turn around in the bedroom (double bonus!!). It may seem like I am losing independence by moving back in with my mom, but I am gaining so much more independence by having access to freedom. I can go to coffee shops to read and hang out, to the store when I want to, to the YMCA to go swimming in their handicap accessible pool, and so much more. I can reach counters in the kitchen and prepare food. I can get in and out without struggling with a less than safe ramp. So prayers that this goes through without any difficulties would be greatly appreciated!!
In other news, I spent Wednesday hanging out with my favorite almost 6 year old, my niece Little Bit. I certainly will not be able to call her that for much longer as she is growing like a weed fed Miracle Gro! I am absolutely in love with her openness to the world and the fact that she is neither embarrassed nor afraid of my health changes. When she has a question, she asks it without hesitation. "Why do you wear gloves to push your wheelchair?" "Why are your legs like that when you walk?" "Does it hurt?" She climbed all over my wheelchair to explore it (again, she is fascinated with it) and even gave one of the family cats (who deserves kitty sainthood) a short ride. She helped push me up a steep ramp so I could watch her swim lessons and then ran with me as I coasted down the steep ramp afterward and laughed at how much fun it was to go so fast. She is so matter of fact and accepting and I love her view of life and the world. My Little Bit is growing up and recently lost two of her baby teeth. My brother, the tough paramedic, can not handle loose teeth and was totally freaked out by the process but Bit is very proud. She is very fair when it comes to gender, stating that the tooth fairy can be a boy or a girl, and she has no clue what he or she does with all those teeth. Apparently age 12 is when you officially become too cool for family, because my other niece and my nephew are both now too cool to spend time with family although I give my soon to be 14 yr old nephew a lot of credit. He had a friend over and very nicely introduced him to me, and then a few minutes later came out to the living room and asked if I wanted anything to eat or drink. Without any prompting from an adult! He really is a great kid/young man.
My Botox injections were postponed from Wednesday to two weeks from Wednesday due to some meeting that came up at the last minute that the doctor had to attend. I just want to get them over with (I am tired of considering just how much this might hurt) and see if I get any benefits from them. I am benefiting from the most recent changes in medication, although it needs to be adjusted somewhat again.
In stomach news, I am still stuck at pureed "stage 3" baby food level. I was so excited to find out I was able to eat a package of mini muffins without smooshing them with milk because they were so super soft, only to discover through a horrendous stomach ache and other GI issues that they were saturated with oil and I can not process that right now. I also had a horrid reaction to broccoli baby food mixed with mashed potatoes. I am getting somewhat used to the stomach pain, and have down the exact combination of meds to take when it hurts versus when I am severely nauseous versus when it both hurts and I am severely nauseous. Too bad my insurance company rations my Zofran (antinausea medicine) to 48 pills per month, even though I receive a generic. I am allergic to Phenergan, and Compazine proved useless the first go round with this so I am rather stuck. I also use Reglan up to 4 times per day. I need to see if my GI doctor has any ideas of other combos or meds we can try or add for nausea that my insurance might cover. I hate having to choose to feel sick many times because I need to save the meds for when I feel really, really sick.
Other than that, nothing much is happening. I will definitely try to update more often although I think there are maybe 2 people who even read this. Oh well, I write for myself as much as for anyone else although it would be nice to someday help someone else in my situation or a similar one out. I have been awake 4 whole hours which means it must be nap time! :)
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Spilling My Guts

1:52 PM

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

11:19 PM

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

1:26 PM

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

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

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

12:04 AM

The Stupid Just Fell Right On Out

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

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

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

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

I'm gonna be a movie star!

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

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

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

7:06 PM

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

2:14 PM

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

12:05 AM

Ring around the Rosies
A Pocket full of Posies
Ashes, Ashes
We All Fall Down

The other title I considered for this post is "London Bridge is Falling Down". I am going to keep this short (I hear the giggles as nothing I write ever ends up being short) because I am so very tired - physically, emotionally, spiritually. 
To begin with, the diagnosis of Mitochondrial Disease that the neurologist was so certain about that he had me begin to receive services through the MDA turns out to be yet another wrong diagnosis. The DNA testing came back negative. I made the mistake of believing in a doctor, of believing in hope, of having faith in an answer. We are way back at the beginning of no one having any idea what this is. The neurologist from MDA wants me to be seen at the Mayo Clinic for evaluation, but I have no idea how financially that is possible given the cost of transportation, accommodations during the stay, etc. I am getting to, if not at, the breaking point where I just want to scream enough. Enough being a science experiment and a case study and a lab rat. Enough living my life in pursuit of something we may never find, in pursuit of a name that would most likely change nothing. Enough wasting precious time in this relentless cycle of testing and doctors and false hope and let down and more grief. Enough being defined by what is broken and time to start living and being defined by who I am and all the parts of me that work!
On top of that, last week I thought I had some sort of mild infection - mild to moderate fevers, extreme fatigue, muscle pain, headaches, etc. Instead it appears that the same cluster of symptoms that began this entire nightmare back in oct 2008 is making an encore appearance. I am constantly nauseous, struggling to drink enough fluids to stay hydrated, no appetite, gagging and choking on many foods (dysphagia), severe pain after eating, muscle pain and weakness, headaches, an effortfulness to breathing even though o2 sats are good. There is a good chance this is another episode of the dysautonomia or unnamed neurological disease that caused the loss of abilities 18 months ago, but to be sure testing is being done to rule out anything treatable. Right now I am eating better than I was at my worst but far worse than at my best. My main food groups are soggy cheerios, pudding, jello, super soft noodles, toddler ravioli, and soft bagle pieces. I gag on the last three but not enough to stop me from eating them. 
I really want to write more, but it was a long, busy day and I need sleep. Thanks to whoever reads this garbled rambling - I appreciate you more than you know!
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No Dreams

11:48 PM

No dreams of front porches with wooden rocking chairs
To while away the hours of an autumn in a life
No illusions of grandchildren gathered round and drawing near
To listen to stories of way back when and years ago

No dreams of newborn nurseries with wooden rocking chairs
To gently soothe the restless hours of spring in a life
No illusions of children gathered round and drawing near
To listen to favorite bedtime stories just one more time

No dreams of a world without the presence of a wheelchair
To make accessible the fragile summertime of a life
No illusions of replacing those old hiking boots
To draw nearer to God in his creation once again

No dreams of a world with seamless, endless guarantees
To string days upon days without illness, without winters end
No illusions of youths invincibility, immortality
To draw bravado and contentment with simply being alive

No old dreams remain, those dreams from before
To hold on to them is to grasp at a wisp of a ghost

No illusions of promises but no fear of tomorrow

To live life with passion, to create no regrets
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1:23 AM
It is a wise man who said that there is no greater inequality than the equal treatment of unequals.
      - Justice Felix Frankfurter

This time of year, with so many graduations taking place, I decided to write about the accommodations that I received from Vanderbilt University through their Opportunity Development Center because of my medical issues. The first major accommodation was that I was provided a copy of the professor's lecture notes or power point slides before class began. This was because taking notes is difficult for me; I lack the fine motor skills to write at any speed for any length of time and even typing can become tiresome. The school offered a note taking service, but I found this lacking because of several reasons: 1) Handwriting, 2) the notes did not have to be turned in until a week after a class session making it difficult to study for tests, and 3) what one person needed to note may not be what I needed to note.I was also allowed to tape record class sessions to review at a later date and improve my notes. One professor even allowed me to leave a tape recorder with one of her TAs who would record the class session for me if I was absent.
The second major accommodation was for taking exams. I took all of my exams by computer with extended testing time. I used a computer because of the previously mentioned difficulty with writing. The extended testing time was to allow for the speed of typing and for any glitches such as printers getting stuck. Some Profs had me take the test via laptop in the classroom, some had me use a computer at the ODC, and others had me use one of several computers in a small never utilized lab.
The third major accommodation was transportation on campus. At that time I was unable to walk on the hilly campus from one side to the other (a good mile) in the time allowed between classes. An offer was made to purchase a power wheelchair for me, but I refused because I wanted to maintain as much independence as possible. So after a LOT of problem solving, the university arranged to have the medical shuttles transport me from one side of campus to the other and back again on schedule with my classes. A few times I was forgotten and left stranded some place but overall it worked well.
The fourth major accommodation was student housing. Freshman year I was supposed to have a single (one person) dorm room in a dorm with elevators and washer/dryer. I ended up on the 3rd floor of a walk up dorm. When I tried to talk to my RA about this, she told me that there was no way a change would be made and basically to suck it up and deal. She also told me I would not last through the first semester. I wanted to pin my first semester 4.0 report card to her forehead. So when housing arrangements for Sophomore year came around, I had to meet with the dean of housing. It turns out he had accidentally put me in the walk up dorm and would have fixed it immediately; he even offered to fix it then but it was the beginning of April and school ended the beginning of May. So I was allowed first pick of the dorm rooms prior to the lottery assignment system due to my medical needs, and I chose a single (one person) dorm room with a private bathroom. It was the largest of the 3 rooms like this on campus. I needed special housing because of the need to sleep during the day, the need to reduce germ exposure, and the need to have my own bathroom for bladder problems, I was able to keep this room for the remainder of my time in college.
The fifth and final major accommodation was with the class registration system. Because when I selected classes, I carefully planned out a schedule with time for breaks and rest in between class sessions, I needed to be accepted into the course numbers and sections I selected. So the computer system was given a code with my name that guaranteed I would be allowed enrollment in any course I requested. This way I could not be bumped to another section meeting at another time, or wait listed for a course.
These accommodations did not give me an unfair advantage, instead they helped level the playing field with my peers so that I could perform to the best of my ability without symptoms of my illness/disability limiting my abilities. There are many more accommodations that someone with a disability can request if necessary, including having textbooks on tape, having exams read to them, using dictation for exams and papers, visual door bells for someone with a hearing impairment, braille textbooks, and wheelchair accessible dorm rooms.
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And the survey says.....

12:35 AM

Every month Vanity Fair magazine has a short interview, called the Proust Questionnaire, that they do with someone famous or powerful or more than likely powerful because they are famous. Seeing as how I have hit a dry spell with topics to write about (be prepared for old teaching stories soon), I decided to interview myself using this Questionnaire.

What is your idea of perfect happiness?
 Knowing that I am loved and that I love others unconditionally

What is your greatest fear?
 Failure, being defined by my illness instead of my passions in life and my longing to make a difference

What is the trait you most deplore in yourself?
Worrying and Doubt
What is the trait you most deplore in others?
Which living person do you most admire?
Sarah from Sarah's Covenant Homes (see link on side bar) - she is doing what I have dreamed of doing and rescuing children who are "tossed away" simply because they have special needs
What is your greatest extravagance?
Fancy flavored coffee for Klaus, my Keurig coffee pot; apps and music for my iPod (I use it for coping)

What is your current state of mind?
Processing and deep in thoughts, wandering within itself
What do you consider the most overrated virtue?
Pride and Independence - the inability to ask others for help when needed
On what occasion do you lie?
To protect someone's feelings (sometimes)
What is the quality you most like in a man?
Love of children, ability to engage with children and truly kneel down to be at their level
What is the quality you most like in a woman?
Being above the pettiness and back stabbing that goes on too often in friendships
Which words or phrases do you overuse?
"suck" a duck - I have no idea where this came from, and it may not seem like it but my kids have taught me a varied and creative cursing vocabulary
What or who is the greatest love of your life?
When and where were you happiest?
Walking the boardwalk in Ocean City; Hiking
What talent would you most like to have?
What is your most treasured possession?
My journals and books and binders and scraps here and there that contain my writing
What do you regard as the lowest depth of misery?
 Celebrating a child's 5th birthday and then two weeks later having her funeral

What is your favorite occupation?
Teaching children with special needs
What is your most marked characteristic?
"No one puts baby in a corner" (I had to get a Dirty Dancing reference in somehow); an odd mixture of fragile innocence and wisdom almost beyond a single lifetime 
What do you most value in your friends?
Their willingness to be there through the good and the bad, to never give up on me, and to see me for who I am
Who is your favorite hero of Fiction?
Jonas from The Giver
Who are your heroes in real life?
Children with disabilities who have to work exponentially harder to achieve a goal and who push, who strive, who work and work without giving up and usually do so while still laughing and smiling and just being a kid; and the parents of these special children who serve not just as parents but as nurses, therapists, social workers, advocates and so much more
What is it that you most dislike?
The fact that it is still socially acceptable to use slurs against people with disabilities and that we have yet to achieve tolerance, let alone acceptance
What is your greatest regret?
I try to live life with no regrets
How would you like to die?
So old and well lived that I welcome death with open arms, ready to step into the new eternal life that awaits me there
What is your motto?
I will stand back up. You'll know just the moment when I've had enough. Sometimes I'm afraid and I don't feel that tough, But I'll Stand Back Up! (Sugarland)

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12:55 AM

Dysautonomia is a term I utilize frequently on this site but have never, to the extent of my memory, really explained in any depth. There is a brief synopsis on the right hand side under "who's on first" but not a lot of detail. Severe non-familial dysautonomias like I have are considered to be extremely rare and therefore not a lot of research has been undertaken in pursuing their causes or treatments. To begin at the beginning, which is usually a good place to start, the word dysautonomia means a failure or malfunction of the autonomic nervous system. The autonomic nervous system is like the cruise control of your brain - it handles all of the automatic functions that your body must do minute to minute, hour to hour without conscious thought. It is absolutely amazing to consider how much our bodies process and maintain without any conscious input from us. In dysautonomia, this auto pilot or cruise control does not work right and so all of those automatic functions are at risk of being compromised. Symptoms vary from person to person, but I will use my particular presentation to illustrate what life with dysautonima can look like.

Neurological symptoms: Ataxia (difficulty coordinating and maintaining balance in space), Lack of proprioceptive awareness (not being aware of where my body is in space), Severe migraines, Difficulty concentrating, Absent circadian sleep wake cycle, inability to feel thirst or hunger, dizziness and near fainting from low blood pressure or low blood sugar

Respiratory: Severe apnea as an infant, Easy shortness of breath upon exertion

Cardiology- Postural orthostatic tachycardia syndrome, episodes of ventricular tachycardia, extremely low blood pressure, arrhythmias

Dermatology: Inability to produce the natural oils that protect the skin

Endocrinology: Inability to regulate body temperature (get fevers for no reason, or when in a hot environment; also drop below normal body temperature for no reason but especially in a cold environment); high risk of heat stroke, absence of the ability to sweat even when extremely hot, frequent episodes of low blood sugar usually from not eating due to not feeling hunger

Urology: Neurogenic bladder, bladder spasms, frequent infections

Gastrointestinal: poor gastric motility, delayed gastric emptying, IBS like symptoms of alternating extremes, abdominal pain, bloating, frequent severe nausea, dysphagia

Others: Dysautonomic crises or what I call crashes when my BP drops radically, my heart rate and rhythm become unstable, I develop a severe migraine, severe nausea sometimes with vomiting, dizziness, personality changes; severe fatigue

Some of these symptoms overlap with the Mitochondrial Disease, so it is difficult to tease out which are strictly from dysautonomia and which are from Mito. But it does demonstrate that it is a disease that impacts your entire body and your entire life. All because somewhere in my brain the messages get scrambled and discombobulated and can not process correctly.
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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.

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