And God Laughs

The Wired Blogger

2012-01-31T22:07:00.000-05:00

What happened to my head?
    a) The aliens returned and placed a probe inside
    b) The barber cur it a little too close on top
    c) I am a star in a local reenactment of a great battle in which the cripple always gets shot first
     d) I am having a 72 hour AEEG to try and catch my brain hiccups to figure out if they are seizures

When asked by an annoying woman in the elevator who just stared at me and asked "Oh My God What Happened to You?" I was tempted to go with A. Instead until noon on Thursday I am wired for sound. I wonder if I can tweak these things to get a decent radio station since we live in the last thing to pass as a city before God Forsaken nowheresville. We hit the event button twice, so hopefully we caught something already. Although it would be my luck to wear this darn thing for 3 long days and have a big episode as we are taking the electrodes off. I loved the instuctions that came with the hook up - don't shower while having 28 electrodes attached to you and a battery box recording them. Um, duh! If it itches (if? if? it started itching before she was done putting the leads on!) don't scratch. Right, cause in my sleep I can control that. That is why for sleeping purposes I get to add a snug knit winter hat over top of the ensemble. Do not stick anything sharp under the bandage to scratch your head. No chewing gum because it makes a nifty pattern on the EEG.
The one direction that has me a little perplexed is the fact that I am not supposed to use my cell phone except on speaker phone or text. Apparently the phones can interphere with the wires and electricity. Now I thought cell phones and their electromagnatism were deemed safe, yet I am being told not to put them near my head because they will scramble my brain's electric signals. I may rethink how often I use my cell phone!
The ditz who hooked me up yesterday had a philosophy that tighter was better for wrapping my head. I have deep red marks under my chin from where she put the chin straps. However, like a winter hat that is a size or two too small the bandage slowly crept upward trying to pop off my head. The suggestion from their office of sticking a nylon over it did not seem like a good idea as I have no bank robberies scheduled this week, so my poor mom had the job of carefully removing what was still on my head and then rewrapping the whole thing. Her chin straps are not gagging me so right there is a huge improvement. All the leads are covered and attached, and I have my trusty hat.
Thursday morning my mom has a DR appointment at the same office building where I need to go get fasting labwork done, so I may venture out in my new look to get labs done and then go out for breakfast. Breakfast is the easiest meal to find a vegetarian option in most restaurants. For fun I could decorate my head with stickers, because at this point dignity is a mute point. Thursday afternoon is dedicated to removing the leads (I have a solution to remove the adhesive that is holding them in place) and then washing my hair 3-4 times to get out all of the sticky conductive goop. Thank God I cut off the 11 inches when I did to donate!! I will be using the cheap shampoo to wash that many times and not my fancy organic expensive shampoo.
Until then I am wired for sound and my head is nice and warm!!

Omnivore Gone Herbivore

2012-01-23T23:46:00.000-05:00

It is incredible the difference in my severe, constant, unrelenting nausea since I became vegetarian and nearly vegan (I love honey butter on bagels and there is chocolate). I used to have to take an anti-nausea pill, an acid control pill, and a pill to empty the contents of my stomach rapidly anytime I ate anything. Now I take them as needed. I can go days without needing anything for nausea except for a pill at bedtime. I am actually getting protein into my system again, and vitamins that I was seriously deficient in because I was existing on so little. However, discovering that the key was to eliminate all animal proteins was not made by any doctor. The doctors kept saying that it might be food allergies, or all neurological, or the result of Gollum (the microadenoma on my pituitary gland), or medication effects, or to just wait 3 months and come back (my favorite - lets do nothing and see if anything changes!). I put the pieces together and it seems that for some reason my body can no longer tolerate or process animal proteins. I have gone vegetarian once before, for a summer, and I have been vegetarian long enough now that once again meat actually smells repulsive. I have no moral issue with you eating it, and I am not out to buy vegan faux leather costs more than the real thing shoes any time soon, but I will stick to my meatless barbque ribs. Thank God that vegetarian comes prepackaged and microwaveable because when I developed the issues with animal proteins I did not simultaneously develop the ability to cook. I look at the raw Tofu and other weirdly named vegetarian proteins like Quean (making things up here) and Waegan and laugh because I have no idea how you take that stuff in the package and make it edible. I then move over to the vegetarian chicken breasts marinading in sweet and sour sauce that you microwave for three minutes before eating and am back in my territory. I do have one question though. If we never established what part of a chicken was the nugget, what exactly is a vegetarian chicken nugget made from?

The Layered Look

2012-01-22T19:51:00.000-05:00

I grew up where you lined your boots up outside the classroom in elementary school and somehow never came home with the same pair. Elementary schools had sleds as playground equipment. I could playoutside for hours in the snow. The worst part of winter and playing outside was always the bundling process, especially when you had a grandparent or parent who thought that anything not covered by at least two layers would fall off. And it would never fail, the moment the last snap was done and the scarf tied you suddenly and inexplicably had to go to the bathroom even if you just went 5 minutes prior.
So I know cold and I know bundling. These skills have come in handy in what I have come to think of as Survivor Woman, Bedroom of Death. We live in an older apartment building that is heated by a boiler system, and my bedroom is as far away from the boiler as you can possibly get. The vents in the living room are closed and it is still warm while my bedroom could serve as cold storage. I half expect one morning to wake up to a few Penguins from the local zoo just hanging out. So each night the challenge is to dress in enough layers to make it through the night without waking up violently shivering and aching from the cold. Layer one usually consists of something like thermal pants, a long sleeve t shirt, and socks. Layer two is then fleece pajama bottoms and a sweatshirt. Gloves are kept next to the bedside and a hat has been known to make its way into the ensemble. By the time I am done I look like the kid brother from A Christmas Story "I Can't Put My Arms Down". I am also not ashamed of busting out the footie pajamas and even wearing a layer under those.
Hopefully my bundling days will soon come to an end as I finally broke down and ordered an electric blanket. I used to have an electric mattress pad which was wonderful but it was broken in one of my moves, and they are more expensive than the blankets. I just hate spending money on something I will only use for a few months out of the year. Then again, hypothermia sucks.

Change the world

2012-01-22T02:33:00.000-05:00

I am hard wired with an innately oversensitive awareness of justice and a compulsion to correct the injustices. I have been this way since I was a toddler worried about the homeless having to sleep outside on the cold winter nights and the children who had no one to love them. My special passion is for children in need, children cast aside by society, children without a chance, children in desperate poverty, children abused and sold as objects. The problem is that the problems are so big and I am so small. It is very easy to get overwhelmed and think that it is impossible to do anything. I want to change the world, to purchase a house in one of the many poverty and AIDS ravaged countries and take in as my own the children no one wants, to change laws and policies, to build schools and shelters and safe places to be a child. Yet for some reason God has decided that, at least for now, I am not going to be in a position where I have the financial resources or health to do all the life saving, life changing things I would do if only I had access to money. Instead I am at a place where I can change the world in smaller, more personal ways. I can change the world for three little girls. I can occasionally support orphans with special needs at Sarah's Covenant House. I can give a little to Reeces Rainbow so that a child can be rescued from a life in an institution. I can do little things with great passion.I can change who I am to be a more open, responsible, dedicated, unafraid to advocate person and that too can change the world. Simple love can change the world.

I Have a Dream

2012-01-16T05:35:00.000-05:00

I could never write a speech as eloquent, as rich in truth, as powerful as those written by Dr Martin Luther King Jr. He led the way to changing our society and he did it without violence or hatred.
In honor of the day set aside to honor him I wanted to write my dreams for our country and our world, the call to action I would set forth for society were I in such a position to be heard.

I dream of the day when no child dies of the effects of poverty. A day when every child will have enough to eat, clean water to drink, and homes that shelter during the storms.

I dream of a country where health care is a right and not a privilege. Where we recognize that as part of our constitutional rights of life, liberty, and the pursuit of happiness we have a right to access medical treatments that will extend our lives, give us liberty, and allow us the opportunity to pursue happiness.

I dream of the day when discrimination based upon disability is vanquished. The day when society will not observe an individual with a disability and automatically come to conclusions about their quality of life, their abilities, and their value. A day when we will be seen for the people that we are and not the disabilities that we happen to have.

I dream of a day when all children from all socioeconomic levels will have equal access to quality education. When children of every race, every nationality, every religion, every ability will sit together in our classrooms and be engaged and challenged by teachers who are supported and properly trained.

I dream of a day when children can just be children. When they will be safe from becoming child soldiers, when they will be protected from the gangs that attempt to recruit them, when they will have the mentors and parental guidance they desperately need. A day when all children can play together without fear.

I dream of a day when all religions learn to respect one another, to honor each other instead of committing horrible atrocities in the name of their God. The day when the unifying message of God is Love is given life and breath.

I dream of a better tomorrow, of a world where everyone has enough, of the end of racism and sexism and ableism, of the innocence of childhood, of peace, of coming together instead of tearing apart. I have a dream.

Odd Skills for a Resume

2012-01-13T23:49:00.000-05:00

I was thinking, because I have been having chronic insomnia and there is nothing better that I could be doing, that I have some incredible skills that would be the glory of any resume.

I know exactly how many matchbox cars will flush down an industrial grade toilet.
I know how to pick a lock to rescue the child who accidentally locked themselves in the bathroom/bedroom/closet.
I have the book brown bear, brown bear memorized. And each peach pear plum. And if you give a mouse a cookie.
I can do the hookey pookey and believe that really is what life is all about.
I can fit a weeks worth of groceries into two reuseable bags on the back of my wheelchair.
I can make special education equipment out of pool noodles, velcro, and duct tape.
I can have entire conversations in my sleep.
I can skip long security lines in a single bound.
I can sign most major curse words.
I can change a diaper, with kid standing, in about 30 seconds.
I can piss off authority/superiors before I even meet them.
I know all the verses to the wheels in the bus, and that bus driver needs a raise!
I can look at fourteen children and blatantly lie by saying it is raining because it is too freakin hot to breathe outside.
I speak toddler.
I am fluent in Pig Latin.
In German I can ask for beer and a cheap prostitute.
I can hold a bucket for a vomiting child with one hand while spoon feeding a child with the other. Never mix up the two hands.
I am not ashamed of doing my best runway walk down a school hallway after letting three year olds put "make up" (face paint) on me and then dress me in butterfly wings, a princess tiara, red velvet elbow gloves, and high heels.
I can fall up stairs.
I can puree anything. Pizza - done it. Chicken strips - done it. Salad- done it. Some foods actually look better pureed than whole like school vegetarian lasagna.
I can hold negotiations with a toddler that would befuddle most SWAT team negotiators and embassadors.
I can rate the accessibility of most public restrooms within 2-3 miles of where I live. And most of the stores.
I can burp the entire alphabet.
I can pass for 18. I am 30.
I can totally bullcrap my way through essay questions on exams and usually hit on enough correct points, even by accident (a blind squirrel finds a nut once in a while) to do fairly well on the exam.
I can take 14 children age 5 to the large science museum in Pittsburgh with only the help of a brooding teenager and return with the same 14 children intact.
I can tune out the sound of a child having a tantrum even as they throw themselves over my feet in mass hysteria.
I always have something odd yet useful in my purse.
I speak medical. Sometimes I even dumb it down for the doctors.
I can recognize poison ivy and am smart enough to wear long pants and long sleeves when near it. Can't say the same for the other two prissy girls working with me on that missions trip.
I can fill up an entire blog post with this list of random meaningless abilities.

And Stella Makes Three

2012-01-11T11:52:00.000-05:00

Yes, I am crazy. I adopted one more little girl to sponsor as I had a feeling that something was left undone, that someone was waiting. That someone was Stella, an 8 year old orphan in Uganda who lives with her grandfather. Her chores are many and include washing clothes, cleaning the home, buying and selling in the market, and carrying water. Like most little girls she enjoys playing with dolls, playing hide-and-go-seek, jump rope, art, and storytelling. She is in the equivalent of Kindergarden and is doing above average in her schooling. I do not have her full sponsorship packet yet, but I wanted to share my newest (and last - at least for the foreseeable future) little girl. Please pray for her as she has already had a very difficult life.

Holding on to Hope

2012-01-09T22:11:00.000-05:00

My "words" that I want to live out with passion this year are faith and hope. Faith includes believing that the Lord will provide in all circumstances exactly what is needed without fail. Hope is the joy that comes from faith, the belief in something more, the intangible that you hold on to when all seems lost. Faith and Hope are meant to be shared, and so I would like to introduce to you two very special little girls that are now my very special little girls.

Meet sweet Miangeda! She is six years old and lives in the mountains of Haiti. She was chosen to be ours by my mother and I as she just captured our hearts. She looks so solemn for such a little thing. I have not yet received the full sponsorship packet for her, but I do know that she loves reading and playing with dolls, and is doing above average in school. Please add this little one to your prayers!

I would like to introduce precious Monique! She is nine, going to be ten in August (her birthday is only 5 days after mine!) and lives on the flatlands of Burkina Faso, one of the poorest countries in Africa. I fell in love with her and can not wait until the day I receive a picture of this sweetheart smiling! I do not have her full sponsorship packet either but I do know that she has few if any toys and instead enjoys playing with boxes. Boxes, it just breaks my heart. She too is doing above average in school despite all obstacles. Please add her to your prayers!!

This is the Bethelehem Child Survival Program in Bory. Haiti. Haiti's maternal mortality rate is 630 per 100,000 while the infant mortality rate is 86 per 1,000. The Child Survival Program provides monthly health screenings for pregnant mothers, a monthly food kit of healthy nourishing food, immunizations and health screenings for infants and young children, education, parental skills training, and job skills training. Please pray for the mothers and children who receive care here.

Yes, I live on a very limited budget. Yes, I could use the money elsewhere. But elsewhere is not where I am called to use it and elsewhere is not going to make a difference in the lives of two beautiful, precious little princesses who already look so weary. Elsewhere is not going to provide immunizations to babies, elsewhere is not going to feed pregnant mothers, elsewhere is not going to educate a community of young mothers on how to meet the needs of their child - simple things like hygeine and avoiding infections to how to read a book together. Elsewhere and Some other time are always going to be there. These children are here, now and they can't wait. I believe that living with passion means giving until it causes sacrifice. I can not change the world, but for now I can change a few lives. God will provide the rest. And I get to share with these little ones the fact that they are in fact true princesses of the Lord, real princesses and instead of being forgotten they were chosen and so loved!! It all comes down to faith and hope!

Hope

2011-12-30T18:51:00.001-05:00

Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words,
And never stops at all,
And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.
I've heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.
E.D.

My last post was written on one of the most difficult nights of my life, as I was helpless as my mother faught for her life following emergency surgery. For six long days she was on life support and all I could do was hold her hand and be her voice to make sure she got the care she needed and the dignity she deserved. For seven more days she required high level medical care, and I spent every single day at the hospital with her (minus two when she was on life support and I was sick). When the doctors wanted to send her to a nursing facility in the area to recover not only did Mom refuse but I politely informed them that they could do so only over my dead body and wheelchair thrown in front of the vehicle. So Mom came home with "skilled" (oh the joke!!!) home nursing care, physical therapy, and a nursing assistant. Before she left the hospital I learned how to do everything the nurses were doing for her, things I never could have imagined being able to do but love speaks another language and God provides strength enough for what you face. Its a good thing too because that "skilled" nurse was only good for providing the medical supplies we needed. It is now seven weeks later and it has been a journey of faith. Faith and hope have been our sustenance, and a wicked sense of humor that allows us to laugh at even the "tragedies" in life. God broke through Mom's stubbornness to allow me to call 911 just in time - another 30 or 60 minutes might have swung the outcome to fatal. God lined up the best surgeon, the one who uses the most modern and aggressive infection fighting techniques. God prevented her from going septic. God prevented pneumonia or blood clots as she has a clotting disorder and laying unmoving is a huge risk factor. God knit her back together from the inside out. God guided her through a process where 60% of patients die within 30 days of surgery. We are blessed. At times one or the other of us gets weary, frustrated, angry, etc. But then we remember all of the blessings, we remember how faith has fortified us and hope sustained us.
This Christmas we were unable to enter into the material aspects of the holidays. No cards were sent, no presents purchased. We did put up the two trees - a 4 foot tree and a table top 18" tree- and decorated them because Mom loves the lights and we both love the memories of the ornaments. By not geting swept up in the commercialism of this season we were able to really see all of the presents we have received - the love of family and friends, the gift of redemption, grace, mercy, hope, faith, life, memories, health, all different kinds of healing, joy, and an abundance of blessings.
My own medical issues and needs were put to one side as much as possible as I have been engaged in assisting with Mom's recovery. She is still weak, still healing. And she will undergo another surgery sometime in 6-9 months. I ran on pure adrenaline and some adjustments to my medications for far longer than I imagined. The adrenaline is now gone and I am a disaster, dealing with the effects of now and the effects of weeks ago and untended medical issues. As things get stable, I will be getting the medical services I need and trying to regain some ground I have lost. Another concern, although I am choosing to have faith in God to provide (prayers are always welcome), is that my COBRA insurance runs out the end of February. My Social Security appeal is at court level but can take 9-18 months to be determined which rules out medicare. The medicaid program I qualify for has no funding. I can afford to purchase a single person policy but there is no pharmacy coverage and you are limited to 2 dr visits per year. I do not qualify for the Obamacare Pre-existing condition insurance because I have had insurance, and you must be without insurance for 6 months prior to qualifying. I can not go 6 months without insurance. I can not go a month without prescription coverage without a high risk of mortality. Thankfully God is a God of impossibilities and moving mountains.
Now that I have a bit more down time I will try to keep my journal updated and write more. I hope everyone had a Christmas full of the gifts that are too precious to be bought, and enters into a New Year that provides them with enough of everything they need but never so much as they forget to appreciate it!

For Which There Are No Answers

2011-11-07T11:46:00.002-05:00

I grew up a child of a seriously ill parent. My mom had her first stroke when I was in preschool and has gone on to have five more significant strokes, not counting TIAs. She has Lupus and Antiphospholipid syndrome. Her left knee has been eaten away by arthritis and it is starting in on her hands. Her heart caused frequent issues. I knew how to call 911 before I knew how to dial a friend's phone number. I should be used to medical emergencies. But she is also my best friend in the world, the one person I have who understands me without the need for words, the person who is always there when I need someone, the one who has faced this monster along with me. She literally fought to help me learn to eat again, fought for me to not give up in finding adequate care, fights to keep me walking around the apartment as long as possible, refuses to accept anything less for me. And I fight for her.
So now when she is lying in an ICU bed on a vent with more lines running into her than I can count and an open abdomen from emergency surgery that they could not close due to infection and swelling my heart is breaking and my world is turning upside down. Never before has she been so sick that I couldn't talk to her, and I would give anything to hear her voice. I have cried myself to sleep the past two nights. I have fallen on my knees before God and cried out in prayers, many that had no words to them. She made it through the first two days without going septic, so that is very important. She shows her temper when they mess with her and gets royally pissed off when they move her or change her bandages, which lets me know she is still there. She seems to be calmed by my voice when she opens her eyes in panic, and that means the world to me. Today the doctor is taking her back in to surgery in an attempt to close her abdomen. This is not going to be a sprint but a marathon, and I pray for endurance - for her body and mine. Stress does not do nice things to dysautonomia. I took this morning off (my brother and sister in law are with her) and will go up to the hospital for her surgery. I just want to know why, and I know there is no answer. I want to know if God thought that we didn't have enough to deal with, because I am not strong enough for this. Most of all I need my Mom to be okay.

Going Bananas

2011-10-21T16:07:00.004-04:00

Fake banana flavor should be considered cruel and unusual punishment. As a child I had to take Ditropan in liquid form for a while because the dose I needed was not available in pills and no one though to do math with pills. It was the most horrendous, torturous fake banana flavor. I hated bananas themselves for years after that. So when I squirted the first mouthful of Nystantin in my mouth to treat the thrust that is a bonus gift from two rounds of antibiotics I was horrified to find it sticky sweet and tasting of bananas. I swished and gargled and swished some more then spit it out quite indignantly. How dare they make this medicie I have to take 4 times a day for a week taste of cloyingly sweet rotten bananas? When I went to find solace in my Mom she had the nerve to tell me that she knew all along it was banana flavor and hadn't bothered to warn me! Nice Mom, I know where you sleep!! It is almost worth keeping the field of fungus to avoid that flavoring!! Hey, I wonder if I could grow mushrooms on my tongue? or moss?or lichen?

Peeking

2011-10-15T19:55:00.001-04:00

I don't know where I have retreated for the past month, but it has been somewhere inside where I feel like I do not have to be anything for anyone and I can deal with life on my own terms. The start of the school year is always hard for me as I watch children and teachers prepare for the return to the classroom and I am reminded that there is no classroom for me, no children eagerly greeting me each morning, no lessons to plan, no rules to break. Add to that the fact that a vast majority of my friends are married (or have just done so) and are now having babies and I freely admit to jealousy at times. I was born knowing how to nurture children, I was born with a heart of a mother and yet this will never be for me and it hurts. I can not safely have any biological children, nor would I risk the chance of passing on the genetics that have caused me to be sick, and no one will ever allow someone with such health disabilities to adopt. When I was a teenager I kept a journal of letters to my future children. So it is mourning for a dream.
Three of four weeks ago I did have my Botox injections done and they have been very successful. This time with a combination of the blood thinner and Vitamin K deficiency I looked like one very bloody human voodoo doll that was held together with gauze and tape. My final bruise is almost gone. I wish I had KAFO braces to wear as they would do so much good, but due to Gollum (the pituitary microadenoma) and the steroid to keep my blood pressure up and my complete inability to get any exercise I have been steadily gaining weight and my braces from last year no longer fit. And at $800 a pair I can't just get another set made.
Six weeks ago when I last saw the endocrinologist he asked me whether or not I thought the medicine he was putting me on would work. Knowing that nothing ever goes easily for me medically I said no. He looked at me strangely and said he thought it would be a huge success. With five days before I see him the medication has done nothing. Sometimes it stinks to be right, but I did tell him so. I sound like such a pessimist, but I have yet to have a first treatment attempt for anything work including most infections.
I have an appointment with a new neurologist on the 24th as the one dr would only be able to see me if I had tested positive for mitochondrial disease (I had funky DNA but not in a known pattern - I created my own) through MDA. The neurologist I saw previously has said with my best intentions in mind that she has no idea what to do with me anymore and this is over her head. I actually appreciate it when a doctor admits that they don't know and are in too deep. So I will be seeing the wife of the MDA doctor so that they can work together to treat me and she has more experience with the "weird and unusual".
I have been listening to a lot of my audio books, which are my escape and my entertainment and my lullaby at night. I find focusing on reading a regular book harder now, which totally pisses me off because I used to read a book in a day or two and now I struggle to get through a chapter. The audiobooks give me the magic of books in a way that is less stressful and easier to access. My iPod is almost evenly split music and books. I greatly prefer nonfiction so I have learned about the Missionaries of Charity and Mother Theresa, the motivations of radical Islamic terrorists, how one girl followed God and is creating massive change in a community in Uganda, the occupation of Tibet and the flight to freedom on one family, and so much more.
My father gave me an air compressor to help inflate the tires of my wheelchair which seem to slowly leak out as I take curbs and such. However, the nozle thingy on the end was old (everything else is new) and it leaks so in the process of trying to put air in my Mom and I managed to flatten the tire. That takes skills to flatten a tire while using an air compressor. My poor brother got a desperate phone call and had to come over to fix the mess we created. Even he had a hard time because the dratted thing has to be held in with force as well as down to get any air into the tire, so I don't feel quite so inadequate. My Dad is going to replace the defective part next week and then I should be good to go. My worst nightmare is getting stuck with a flat tire, cause its not like I can hop out of the chair and start pushing it home.
I will try to update again soon and stop withdrawing so much, but I also have learned that however I feel and however I need to cope are normal and acceptable on this journey. I can't do it how someone else would do it, I can only live out my journey one day at a time.

A Post With No Name

2011-09-01T19:25:00.001-04:00

It has been a long time since I wrote here, and yet I find myself struggling to come up with anything interesting enough to bother with a post. So I think this will be a series of small posts, or whatever happens to come out of my fingers as I type.
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On my birthday I had the HIDA scan done of my gallbladder. The first hour was easy, just lying there as a dye collected in my liver and gallbladder. It was boring but I have had longer MRIs so I could easily pass the time. Then they bring in the syringe of misery. This is the hormone that causes your gallbladder to contract. He warned me it "might cause a little nausea and cramping". Okay, that is like saying the Pope might be a little Catholic. It is injected over five minutes, and within seconds of the first dose I was violently nauseous and felt like I had been kicked by a mule. And each time he added more medicine it upped the fun factor. I begged him to just slam it in all at once and get it over with, but that was a no go. The nausea and pain lasted about 20 minutes before abating. I don't have any results yet because on the day of my follow up appointment I did something stupid involving a shower and was in too much pain to go. I now have proper respect for the shower.

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The day after my birthday I went out to eat with my mom, my brother, and Little Bit (my 6 year old niece). Little Bit had very proudly chosen my birthday card so it not only had holographics but played music at an ear splitting decible when opened in the restaurant. :) She loves those musical cards. Its so cute, she signed it herself and managed to misspell her own name. She was showing off a new dress she had gotten when they went back to school shopping and talking about the great conundrum because the had not just the dress in that style but also a skirt and a shirt and she had the hardest time deciding which to get! I had a feeling she might be a bit of a princess when she had to have access to the floor to ceiling mirror at 12 months to approve or disapprove whatever outfit I put her in for the day. Yet she is also tomboy, playing in mud, fishing with her dad, and taking karate.
I ordered crab legs for dinner (they are low fat and don't hurt my stomach as I do not use the butter). I can not figure out how to eat crab legs without things going flying and generally making a mess. Little Bit decided to point out to me that I was being "very messy eating your crabs, getting it all over the table. I informed her I was not taking etiquette lessons from the child who two minutes earlier had two macaroni noodles stuck in her nose to look like a seal.

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Gollum (the pituitary microadenoma) appears to me a prolactinoma. He is sending out mildly elevated levels of the hormone that causes my body to think it is pregnant or nursing. It is possible that the low levels are from my polycystic ovary disease and Gollum is doing something else. We will recheck everything in October, but I am starting a new drug to bring down the prolactin levels this week. I really like the endocrinologist. He is trying to look at the whole picture of my presentation, as he feels that there ae too many diagnoses and something should be able to explain most of my issues. He is a well respected and highly published academic doctor so I am hopeful he may find something.

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I will try to write more soon, more that is humerous and not so boring. Just not a ton of things going on right now, and it has been too hot for me to go out of the house lately. I did go to Target on Tuesday and today for medications and a little wheelchair bowling on the side :) I also took some birthday money and went to my favorite smelly stuff store (Bath and Body Works) and stocked up on hand sanatizers and lotion. Today I had to replace my expensive earphones for my iPod. The others got a short in them and only one ear worked. I hate having to buy the expensive ones, as it feels like shoving money into my ears, but I sleep with my iPod on listening to audio books and so the earphones need to be comfortable, durable, and have good sound to them. I also found a pair of long pajamas with owls on them so that made me very happy! Owls make me very happy!

Thirty

2011-08-15T23:18:00.000-04:00

Thirty years. That is thirty more birthdays than the doctors predicted I would be alive to celebrate. Thirty more years of life. Thirty years of tears and laughter, of falling down and standing back up, of wonder and amazement, of learning and learning again, of sacrifices and blessings, of giving and accepting, of seeing through the artifice, of passion and determination,of family and the most incredible friendships, of love. In thirty years I have laughed more than I have cried, I have gotten up each time I have fallen down, I have never surrendered to the definitions expected of me, I have been blessed to love some of the most incredible children God has put on this earth, I have learned the power of forgiveness, I have seen the human soul at its most fragile, and I have learned to live without fear of judgement. Over thirty years I have witnessed sunrises and sunsets, chased fireflies across a field of wildflowers, climbed haybales and slid down, splashed through a mountain creek, slept beneath the stars, jumped in mudpuddles, danced in the warm spring rain, received flowers from someone who loved me, walked the ocean shoreline on a crisp spring morning, sat around a summer bonfire, learned to see the world through the eyes of a child. I have been richly blessed in thirty years. I can not count all the blessings that I have received, but I know that they number more than the stars in the sky tonight. I am ever thankful for these thirty years and however many more I am given to not just live but be alive.

Name it and Claim It

2011-07-29T21:30:00.000-04:00

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

Some Wishes Bite You in the Arse

2011-07-24T13:36:00.000-04:00

I have been wishing for answers for the GI symptoms, for the neuro issues, for the dysautonomia, for the weird random symptoms, for the whole package to be wrapped up in shiny paper and topped with a bow. Well that wish can keep looking for a star that will let it hitch a ride. But I did get a few of the wishes within the genre granted and it turns out perhaps I should have been more specific because they seem to have come around and bitten me in me arse. My neurologist of all people figured out the severe nausea and stomach pain when I eat most anything other than simple carbohydrates. It should have been so obvious that I am now, more than ever, going to be switching GI doctors in the practice. My body, it turns out, is incapable of absorbing fat. Any fat that goes in up top comes out down below and causes as much misery as possible along the way. Now what we do about this I have no idea, I am hoping that we will work this out at my next GI appointment in a week or two. But it is an answer. Then I got the results from my brain MRI that was done almost two weeks ago. We did this one to try to diagnose the reason I have no sense of thirst, so we did a special focus on the hypothalamus and pituitary glands. My brain as a whole was structurally normal. The hypothalamus passed inspection. However, the pituitary gland has a hitchhiker. The pituitary gland is 9mm in size and I have a 3mm microadenoma that has decided to make itself at home. Anything under 10mm is a micro and adenomas are almost always benign. So it is a little guy, but he wasn't there on my last MRI and I would prefer he not grow. So I will be seeing an endocrinologist at some poing in the near future to see what effect the little guy is having on my body. Little guy needs a name. Any suggestions are welcome. I wished that we would find something tangible to explain some of the intangible symptoms, but perhaps I needed to be more specific once again.
I am very tired, so this is going to be short and strictly medical. I apologize. I will try to do a regular update very soon!! Thank you so much for reading and caring!!

Bad Girl

2011-07-08T15:57:00.000-04:00

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

More Randomimity

2011-07-03T15:50:00.002-04:00

Not much has changed - each day is like shampoo:lather, rinse, repeat. So there is nothing big and exciting to write about. So instead I am going to write a few little random bits and pieces that do not necessarily go together except that they all came tumbling from my mind. This could get scary. :)
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Teaching Tidbit
When a new student transferred to our school district with an IEP in place we had to accept that IEP and place the child accordingly and then we had 9 weeks to call a new IEP meeting to discuss what we felt was appropriate placement with appropriate goals. Nigel was a transfer student who had just arrived in the classroom, coming from a district where you received services even if you were just considered at risk and were not delayed. They had more money than we did. It was lunch time and we were pouring milk into cups. He looked with pure disgust at the cup placed before him and then spoke up. "Excuse me, but at home I have a nipple." (meaning that at the age of 4 1/3 he still drank from a bottle) The principal happened to be in the classroom and she immediately responded "Well at home I have a Marguerita. Life's tough kid."
Nigel also tried to do a "gangster" deal with one of our other students who was using a stander to stretch out his hamstring. He slid up next to him, eyes darting to make sure no one was watching and then whispered in a grovelly voice "Heyyy Samuel. Wanna get down??"

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Oasis in a Desert

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

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

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Tummy Time

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

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Heat Hermit

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

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Happy 4th of July!!

Things that go Pthhhht

2011-06-22T23:02:00.000-04:00

I do not get out of the house as often as I would like for a variety of reasons - the weather (too hot/too cold, storming), the massive amount of energy required to get presentable and then wheel around some where (my arms are growing weaker damn it!), not feeling well, and the lack of a real purpose to go somewhere. Last week I was initiated into the true wheelchair user's club when I encountered yet another reason for not leaving the house. I was all prepared to go, had my shopping list programmed into my cell phone (what? I am more likely to lose a piece of paper than my cell phone! especially because I paid for the cell phone!), wrestled shoes on over my contorted feet (no botox this round so everything is tight as tight can be), and even managed to do something with my massive mess of hair (I am growing it out to donate and that is the only reason I have not taken scissors to it yet - it is much to thick and curly and snarly to grow long ever again). Then I sat down in my wheelchair and I was going nowhere fast. Okay, so I tend to go nowhere fast on a regular basis, but this time I had a reason. The left wheel was as flat as could be. It had been a long time since the air was checked and added to the tires and a few weeks since I had last gotten out of the house (I know, I am pathetic!). I think the bumping down the flights of stairs at the GI appointment encouraged some air to escape faster than my normal escapes from curbs and bumps. So I was stuck and like the awesome planner I am, I do not have an air pump/compressor. After some phone calls and cursing of Nessarose (the wheelchair), it was decided that the next day my brother would take my mom and the two wheels to the gas station to get air put in them. Thank God my wheels come on and off of the chair! I can only imagine what it looked like to see two people each holding just a fancy wheel walking out of the apartment complex or standing around the air compressor at the gas station. Someone probably thought that they forgot part of the bike when they stole it! The good news is that I am now back up to full pressures in both tires and it is holding steady (I check daily because I am paranoid). And for my birthday I am going to harass my dad for an air compressor. Cause nothing says loving like the gift of hot air!!

A Budding Grafitti Artist

2011-06-11T00:41:00.000-04:00

Kevin was a child whose developmental delays were clearly a result of his home environment and not a result of any intrinsic disability. He, and thus we, reported abuse on numoerous occasions but no one listens to a three year old boy with speech delays and a fear of strangers. Kevin was prone to extreme rage which he could not identify nor figure out on his own how to regulate (this was an IEP goal for at least two years). He also lacked impulse control. One day we had been coloring with markers for art and I had put the bucket of markers out of general reach, but still within reach of a climbing child I would discover. The children were playing nicely in centers when all of a sudden Chrissie came running up to me and announced "Kevin is drawing on the walls!" I looked and sure enough, Kevin was using a brilliant blue marker to decorate the imaginative play area, drawing on the walls and the table and the play kitchen and a few dolls. Calling him over, I asked him what he was doing. With an angelic face he answered "Graffiti."

"Kevin, we do not have graffiti in my classroom. We respect our things."

"I sorry."

"I am glad that you are sorry but that was a bad choice. What happens when we make bad choices?"

"[things] we don't like."

"Now you are going to have to clean up your grafitti,"

I filled a small bucket with soapy water and plopped in a sponge. I then supervised as Kevin scrubbed away every mark of his graffiti. The problem was he seemed to be having fun cleaning, so I decided that we would extend our grafitti removal project. So with bucket in hand we went to the two other special education classes and did some more cleaning until it was not fun anymore. Each teacher also played along, acting horrified that Kevin would write graffiti on his classroom walls and toys and talking about what a bad choice that was. When we walked back to our classroom, Kevin barely cleared the ground with the bucket he was lugging.
"Kevin, do we do graffiti at school?"
"No ma'am!"
"What happens if you do graffiti?"
" You clean it. And clean more."
"So are you going to draw on my walls again?"
"No Ma'am!"

After that day Kevin turned into a marker monitor, making sure they all had their lids on and that none left the tables. He always reminded me to put them away in the cupboard after we used them. And he never wrote on anything other than paper and appropriate materials again. :)

My redundant life

2011-06-07T16:04:00.001-04:00

It has been a while since I have written because my life is rather lacking in the excitement value. Each day seems a lot like the next: lather, rinse, repeat as necessary. There are slight variations - today I am laying on the couch in my blue and pink plaid pajamas, yesterday I laid on the couch in my colorful owl pajamas (I love owls). I may switch up what kind of cereal I have for which meal, and there was the huge moment when I had corn on the cob instead. We lost spring to a month that pretended to be winter and now to a month pretending to be summer. It has been over 90 degrees on multiple days already - I live in the North for a reason! I did my dues in the South! So I have been trying out different ways to start/write this post:

It was a dark and story night... Um, isn't every night dark? And while we have received enough rain for me to call Lowe's and ask if they had Gopher bark in stock, we have been blessed to avoid the storms. Scratch that one.

Once upon a time... Oh no! This almost always guarantees a prince, and the last prince charming I met was anything but charming in the end. If that was a prince, I am now accepting dates from frogs.

Long, long ago and far far away...Lets see here. This delightful disorder has decided to turn my memory into a very short term process so that kills long, long ago. And far away? I don't think that Target counts as far, far away.

In a galaxy far away... I may have my head in the clouds a lot of the time, but the rest of me resides solidly on Earth. Besides, I would probably get starship sick.

There once was a man from Nantucket...Too predictable.

There was an old lady who swallowed a fly... One, I have accidentally swallowed bugs that have blown into my mouth and it is retched disgusting. Two, there is way too much mean on that list for my stomach to handle and I would be down for the count long before the horse.

Old MacDonald Had a Farm... I have cleaned up enough poop in my life between my niece and my students. We are not adding animals into the mix!

This is the house that Jack built... Lets see here...this is the stain where I spilled the coffee on the top of the pajamas I wore while lying on the couch that needs rebuilt?

OK, that is all of the "creative" introductions I can think of and not a single one works. So I guess I am out of ideas for today, but I will try again this week. Perhaps I will bring out some of my favorite stories of my children from teaching. "There once was a teacher..."

GI Doh!

2011-05-25T20:28:00.001-04:00

I feel like I need to apologize for all of the years that I took eating for granted and never appreciated it the way that it should be appreciated. These past two and a half years have taught me many things, including that there is so much more to the process of eating than I had ever appreciated. I have a far greater respect for how much work many of my kids do just to eat.
I had last been to see the GI doctor last May when I was having another fun round with severe dysphagia and serving as a taste tester for infant foods. The muscles finally got their groove back and I figured I was good to go. There was one hitch in the "all is better" though. It turned out that the only foods my stomach would accept without extreme reactions (pain, violent nausea, vomiting) were simple carbohydrates. My meal choices were narrowed down to breakfast cereal, oatmeal, bread, bagels (I occasionally still choke on those), rice, tortilla chips, pancakes, mashed potatoes, and macaroni. Oh, and I can tolerate milk and small amounts of cheese and freeze dried peaches and apples (to make eating them easier). This diet not only got old after a while - cereal for three meals a day is not something I recommend. The other concern is that I am missing huge aspects of a healthy diet like protein, and potassium, and a multitude of other essentials. What is also annoying is that I am eating very little, and have double checked by measuring calories, yet I am consistently gaining weight. Do you know how annoying that is? My third concern is that I get severe pain behind my right ribs at times, after I eat. So it was back to the GI doctor.
The GI doctor and I apparently were not at the same train station at that appointment because he was focused on the occasional difficulty swallowing that has remained after the dysphagia which is not an issue. I was focused on the above issues. The two trains kept passing but never meeting. He even admitted twice to not listening to me as he was writing (doodling?) on a notepad. In the end he insisted I have another swallow study done before we look at anything else and I agreed to prove to him that I was right when I said I can swallow.
So I had the swallow study done yesterday to please the GI doctor. I hate this test because Barium has its own specific definition of disgusting. After a feast of Barium, the surprising results were that I can swallow fine. As I was waiting for the bus I noticed my mouth felt weird, but I attributed that to the fact that I had drank thick barium and eaten barium coated crackers and not been given anything to drink afterwards. I got home and was not feeling good so I took some benedryl for my allergies and laid down. I am so thankful I took benedryl. When I woke up my mouth still felt funny and my throat hurt but I still didn't connect the dots. I had to chug milk anytime I swallowed anything like my meds and I could not eat dinner and laid back down. It was not until evening when I looked in the mirror at my tongue that I discovered that it was swollen and covered in "hives"/raised sores. I had my mom look in my mouth and throat and it was all fire red, swollen and covered in the same "hives". I am betting these go all the way down into my stomach given the pain when swallowing and the stomach pain. Apparently in between the last swallow study and now I have developed an allergy to Barium. Now I know that the ER was probably a decent idea, but I could breathe fine and my ER copay is a great deterrent. I called the doctor today to see if maybe he could call in a round of steroids but he said to go to the ER. That copay is still a great deterrent and since it was not getting worse I decided to keep taking benedryl every 4 hours and stick it out at home as long as it does not get worse. The upside to this, once my tongue fits neatly back into its allocated spot in my mouth and I can swallow and talk normally again (I currently sound like I have been hitting the bottle hard as everything slurs together), is that I never have to do anything involving Barium again.
So next Tuesday I go back to the GI doctor to go over my results (I already know - normal, duh!) and see what we do from there. I have an idea - lets look at something other than swallowing! I can get the food into my stomach, it is convincing the stomach that it is food that is the problem!

What Goes Up.....

2011-05-21T00:04:00.000-04:00

Tuesday I had an appointment with my GI doctor (quite possibly my soon to be replaced GI doctor but that is another post) which is on the second floor of a brand new medical building by the hospital. I arrived a little early, only to find out that regardless of my 3:30pm appointment time the doctor was not expected in the building untill some time after 4pm. I need to learn his procedure days and refuse to take appointments on those days. So I read an entire National Geographic magazine, and the great and mighty doctor finally appeared. As I was wheeling back to the exam room I crossed paths with him and he stopped in his tracks and looked at me as if I has grown a third eye that was winking at him. He asked me how I got there. Okay, now I know the doctor has had a long day but what the heck is going on? I stare at him. He informs me that the elevator is broken and he had to take the stairs. My mind immediately goes into that place where you run through eighteen different scenarios at once. I am new to this wheelchair stuff, I don't know what you do when the elevator breaks while you are on an upper floor. So we decide to proceed with the appointment and pray that the elevator is resurrected during that time. The appointment sucked (more on that in another post) and towards the end the nurse comes in to report they have no time estimate on how long it will be before the elevator is repaired. I now start thinking if I could slidel down the stairs on my butt safely with someone carrying my chair and just how many bruises that would result in. On the same floor of the medical building is pulmonology, and they happen to have a patient in a wheelchair as well. Their nurses, being smarter, called the local fire department to come carry the patient downstairs so I am just going to be added on to their work order. Have I mentioned that last time someone tried to carry me down stairs I fell and it sucked? So first two EMS workers show up, apparently in case I get dropped rescue workers will be right on scene. I really don't know their purpose, the little chick EMT carried my purse down the stairs and my wheelie bars. Then the firefighters arrived. This is one hell of a way to meet cute guys, but I didn't mind a few of the views I got. :) They then explain they are carrying me, in my chair, down the two flights of chairs and I have to be tipped back to the same angle as the stairs. I think I hit a record new shade of white. But what choice did I have? I informed them that I was more than "nervous" and they encouraged me by saying they had already done this once so they wrked out the mistakes on the first guy. Two flights of stairs have never seemed so long in my life as I bumped along. Seeing as my wheelchair already needs some repairs, I was waiting for something major to decide to go as we were going down the stairs, like the back which is already askew. When we got to the bottom I was ready to kiss the ground, had I been able to reach it. I had to wait for EMT chick to come down with my purse and wheelie bars so the fire fighter and I were talking. Lord help him, he is cute but I wonder about the brains. He asked "Was the elevator working when you got here?". Seriously?? I looked at him and said "Nope, I hopped my wheelchair up all those stairs." Dude, Here's your sign.

I now pray over the elevators that I get in that not only will they get me up to my destination safely but that they will return to get me when I need them and safely restore me to dry land. I can do without the fire fighter escort.

My Amazing Mother

2011-05-07T23:00:00.000-04:00

Most mothers give their infants life once, which is a beautiful miracle, but my mother spent a year in her life breathing life back into me and giving me life again and again. I was born an apparently healthy infant, bald as bald could possibly be and full of attitude, and giving no signs of the genetic disease that was already written in every cell of my body. When I was five months old my mother was rocking me to sleep while watching a movie on TV. She did not want to miss the end of the movie, so she laid me on a blanket on the ground rather than taking me upstairs to my nursery. When the movie finished she discovered I was grayish blue, not breathing, and had no detectable heart beat. The monster in my genes had decided to rear its head in the form of relentless apnea. My mother learned infant cpr, I was hooked to a monitor, and no one ever slept through the night. Our address became well known to every fire fighter in our small town and they did not bother to knock on the door if a call came in, they came through the door one way or another. Yet the apnea was vicious. After one particularly prolonged episode at 6 months of age, my parents were taken to the little room no parents ever want to go to and informed that I was profoundly and terminally brain damaged with a life expectancy of less than six months. The recommended course of treatment was to leave me hospitalized or placed in an institution until I died naturally of another episode. My mother refused to give up on me. She informed the doctors that I was a child, not a used car that you return and replace because it is broken. I went home with her that day. The apnea continued up until my first birthday, but my parents persevered and delighted as I met every milestone. When I started to read at two and a half, my mother realized that she was in for a totally different ride than any of the doctors had tried to prepare her for.
My mom has been my biggest supporter. She believes in me even when I am unsure. Without her support I never would have had the courage to apply to Vanderbilt, let alone done well enough on the scholarship weekend to win a full Deans honors scholarship. Without her support I never would have had the courage to apply to Virginia to teach and I would have missed some of the most amazing children that touched my life, and an incredible friendship with a friend unlike any other. Without her support I would have never had the strength to go through the torturous ordeal of relearning to eat in early 2009 when I had lost the ability to swallow, and I would be dependent on some sort of artificial nutrition. Without her I would not be me. I would not have my very keen sense of justice, my heart for others, my willingness to risk getting hurt to love those who need it, my passionate way of living life, my foundation of faith, my wicked sense of humor, and so much more.
So not only has my mother given me life more times that we can count, but she has shaped that life and given me the strength and support to be the person I have become. I an blessed to be her daughter, honored to be her friend.

Spring Kaleidoscope

2011-04-29T00:46:00.000-04:00

Spring used to be one of my favorite times of year, but now it is bittersweet. I still love the crisp bite as fall snaps back as it recedes (eventually, someday), I love the sudden explosion of green everywhere, I love the brilliant sunshine that emerges after the rain, I love the endless variety of flowers each as if painted by hand. I love how everything is bright and new and alive again. I love to go out in a fresh spring rain and chase puddles to splash just because I can and to twirl in the raindrops falling down with my arms open wide.
The bitter part comes because this was always a particularly active time as a teacher, with IEPs to write and end of the year excitement to plan and the joy of explorations outside for hands on learning, and the delight of seeing how far my kids had come in one school year. We always went on a Bear Hunt for Easter because everything had to be secular, and the kids followed directions of prepositions like over, under, on, around, through to find stashes of small toys until at last we reached "the bear cave" where they creeped in and found a box of bears to choose a special friend from. In May we hatched our own butterflies and watched them grow from egg to caterpillar to butterflies that we eventually set free. I was always amazed that my not so "gentle hands" never killed a butterfly in their eagerness to see them and get to them. We made special mother's day gifts and cards, and father's day too because that came after school ended and I loved being creative with these. We baked cookies, cut up fruit for fruit salad, made invitations and sent them out, decorated the tables, and set them so we could enjoy a Mother's Day tea made and served by the children (with assistance as needed). We planted flowers and watched them grow, each having a day with the important chore of watering and measuring them. There was always out water day when I asked for the kids to be sent to school in swim suits with a change of clothes and we took the huge water table, buckets, a wading pool, and every water toy ever invented out into the hot sun and just splashed until everyone was content. On the last day of school I set up a carnival in our classroom with a pinata, classroom games like bowling and bouncing frogs and pin the tail on the donkey and matching ducks and face painting and lots of balloons and bubbles with prizes at each game and special snacks. Then each id received their goodbye package from me - a framed photo that I had taken of them during the year, a photo CD of all the pictures I took, a new book chosen just for them, bubbles, and a small toy or stuffed animal.
I miss all of those classroom adventures. I miss the wonder of finding a ladybug and the lessons that came naturally from it. I miss the wide eyed wonder watching a butterfly come out of its cocoon. I miss the laughter, the fun of learning, I miss getting good and messy in the name of education. I miss my kids.

My Easter Miracle

2011-04-20T19:00:00.000-04:00

As I previously discussed in an earlier journal post, I lost my health insurance on March 31 when my standard 18 months of COBRA coverage ran out. I faced a huge conundrum because the school district (Dante's Inferno level 14) gave me 10 days official warning and no information regarding programs available post COBRA. Strike one - a personal insurance policy would cost me a fortune and provide enough coverage to last about two weeks. Strike two - I am in appeal with Social Security so Medicare is out. Strike Three - Medicaid required a three month process of submitting documentation and waiting for some grand governmental diety to determine if I am indeed disabled before I could receive any services let alone the cost due to me making too much money. But God never accepts a strike out. There is a little clause that the school district (may they enjoy their spot in the Inferno) never notified me of which states that if you are disabled when you start COBRA or become disabled while on COBRA you can apply for an extension of coverage at the end of the 18 months. I found this little tidbit out doing research online. Strike one - they require a letter from social security and I am in appeals. Strike Two - the school district hates me with a passion and would hate to have to give me more benefits. However, I was able to establish that given that social security is in appeal, a letter from them is impossible to obtain, and so we went with documentation from my medical team. My neurologist is my hero because he wrote the most kick butt letter listing out every diagnosis I have and explaining that I am 100% medically disabled and severely disabled. Less than a week after them receiving this letter I received a letter in the mail. I HAVE MEDICAL INSURANCE AGAIN!!!!! It is for 11 months, so it ends February 28, 2012 but that gives us so much more time to work on things!!! ANd the miracle continues - I never had to pay a large sum of money for a prescription, I never had to stop taking a medication because I could not afford it, and I never had to go without necessary medical care!!! God ROCKS!!! I was terrified as I watched my medication supply deplete and knowing I could not afford to purchase the next refill. I was wondering if I would survive long enough for Medicaid to decide I was disabled or if the lack of medication would prove the point before then. To be blunt I was scared of dying and I feel like I have been given back my chance at living again. I know it sounds dramatic, but my health care and medications literally keep me alive. Thank you to everyone who prayed, who offered good thoughts, and who cared. I burst into tears when I read the letter because it was such a weight lifted and fears dissipated. Such a lesson in the fact that God provides exactly when it is needed and I should have trusted all along instead of wasting my time on fear.

Waiting For Superman: Two and a Half Years in the Trenches

2011-04-13T09:35:00.000-04:00

For two and a half years I worked for a large public school system in Virginia as a special education teacher. Our schools were site based managed which translates to the principals having absolute power over everything that happens at the school, with little accountability. To demonstrate this effect on student learning, let me compare two different elementary schools that I taught at. School One received a high percentage of students who did not speak English upon entering the school system and who tended to be a migratory population. Over 80% of students received free or reduced priced lunches, and it was not uncommon for entire families to live in single rooms of homes shared by multiple famillies. Special education numbers were relatively high. School Two was in an upperclass neighborhood where children entered with a high percentage of students having received a private early childhood education. A vast majority of students were fluent in English as a first language, less than 20% of students received free or reduced priced lunches, and the population tended to be stable. School One consistently performed higher than expected on standardized tests, and higher than most other elementary schools in the district including School Two. School Two had just average performance on standardized tests. School one had a culture of great teachers working together for the benefit of our children. School Two had a culture of every man for himself. School one put into place the resources the children required to learn including an ESL teacher for each grade level, a Spanish speaking assistant in each class in lower elementary, a highly accessible guidance counselor, and a school social worker who helped families access resources. School Two used resources for fancy technological resources and placed the blame for test failure on the students. At the first teacher's meeting of the year pictures were shown of students who had failed and "should have passed". The principal was an ineffective leader and an entire grade level had quit the year before I taught at that school. Teacher turnover was high and teacher collaboration was low.
In terms of poorly used resources, I can attest to the resources provided to my special education classes and purchased with school finances yet obviously given no thought. As a preschool special education teacher I had no need for the stacks of lined writing paper I received, or the scissors (heaven help me if I give a three year old standard scissors!), or the folders, or the binders, or the pencils (in fact we had our pencil sharpener removed so little fingers could not explore) or poster paints. What we needed and had to beg, borrow, and steal to get were things like construction paper, finger paint, velcro, batteries, and cleansing wipes. My classroom for children with multiple and severe disabilities had more writing paper, crayons, markers, scissors, notebooks, pencils, workbooks (!), glue, and poster paint than I could have used in three general education classrooms but we had no batteries for our battery operated toys and switch devices, no cleansing wipes, no adapted writing devices, no slant boards, no devices for the visually impaired, no construction paper, only three working push button communication devices for a class of 7 nonverbal students (so 3 at a time could communicate), no adapted computer until I brought in items I had received from a grant while teaching preschool, no velcro, etc. Each year I taught I spent an average of at least $500 of my own money to supplement the resources, or lack of resources, provided to me by the school district.
These are just some examples from just two and a half years of teaching. My teaching was interrupted by becoming disabled, but had I not I was planning on quitting with the district at the end of the third year with School Two even though I would have obtained the almighty tenure because I was so disillusioned. I was looking into private schools for children with disabilities that were less constrained by the public school attitude towards special education, where children came first regardless of perceived ability.

Waiting For Superman

2011-04-09T21:57:00.000-04:00

This evening I curled up on the couch with my laptop and favorite blanket and watched the documentary Waiting for "Superman". I must first note my potential bias as having been a teacher and having a vested interest in the education system. That said, this documentary was heartwrenching in capturing the failure of the American education system. No child or family should have to pin their hopes on receiving a decent education on a lottery drawing because everyone from the parents in the neighborhood to the administration at the school know the local school is no place for a child. When money has failed and legislation has failed, thank you No Child Left Untested (No Child Left Behind) then something else must change. What worked 50 years ago is not going to work today. The first thing that every teacher, administrator, policy maker and legislator must agree upon is the belief that every single child regardless of preconceived notions of failure is fully capable of learning and succeeding. The next thing that needs to be done is to get rid of the obstacles to radical change. Teachers unions are far too powerful in their ability to cripple efforts to make radical changes to how we educate children. I do disagree with merit based pay based upon the current assessment system as the testing completed is prejudiced against ESL learners, children with disabilities, and children from different backgrounds. I am all for eliminating tenure and making teaching like every other job - if you fail to do your job up to expectations then you lose your job. No free rides just because you made it through two or three years. We need to look at the schools that are succeeding, the radical schools that are breaking all the rules and defying all of the odds and learn from them. If we don't start to apply the lessons they offer to us, we are soon going to cease to be a superpower in the world due to a lack of educated populace. I would totally recommend this movie for any parent, anyone who cares about a child, or anyone who cares about the future of our society.

I've got it....never mind

2011-03-26T00:45:00.000-04:00

I learned something new and critical to life today. The moment I utter the words "Oh no thank you, I've got it." whatever object I am referring to will come to life and voraciously launch itself as far from my body as is possible. The items become projectiles in a show of willpower and supremacy of inanimate objects over my ability to contain them. I went shopping at the magical, amazing local bookstore today and had my usual stack of books on my lap. A kind person asked me if I needed help with my items and I repliec "Oh no thanks, I've got it but I appreciate the offer." A minute later those books were flying as if possessed by literary demons and scattered in a semicircle around me as if a small explosive device had detonated. Now blushing, I collected the books from the floor with much difficulty and much shame. After purchasing my newest treasures (I had a gift card left over from Christmas- bonus!) I decided to visit the Starbucks at the store because it is the closest thing to a real coffee shop I can get to in this town. As the cashier handed me a tray with my Italian Soda and Banana nut muffin on it she asked if I wanted her to carry it to the table for me. I once again replied "Oh no thanks, I can get it but thank you for offering. Three rolls later and everything goes sliding forward at terminal velocity. Somehow by slimming my knees up as high as possible considering my feet are strapped down, jerking the chair backwards, and grabbing for my drink I manage the world's most ungraceful save and only encounter minor whiplash. I saved the Starbucks, which is the most important thing because a spilled Starbucks is worth crying over! So it seems that people asking me if they can help triggers some switch in the universe that causes my objects to scatter with great speed. So now I know if someone asks me if I need help and I say I am fine I should immediately secure all items in their full and upright positions and prepare for turbulance. :)

Governmental Logic

2011-03-24T01:01:00.000-04:00

I do believe that the world has gone insane, and our government is leading the way. Two weeks ago I sent in the eighteen page pamphlet to apply for Medicaid, thus becoming complicit in the deforesting of an acre of rainforest. I called today because my insurance runs out on March 31 and I am becoming a little anxious here. It turns out that the program the social worker feels I best qualify for requires me to fill our more paperwork, because one acre of rainforest is just for sissies, and then send it to the state capital for them to decide if I am disabled. If I am then bonus, I have health insurance. If they deny it then I am screwed. The best part is that this is usually a three month process. Right. I tried to explain to her that I don't have three months, hell I don't have three weeks and she said to get samples from my doctors. Because doctors give out three months of samples of medications that cost $650 a month or injections that cost over $1500. Apparently if you are disabled and most in need of medical insurance they figure you can afford to wait three months to get it. So soon I will be picking and choosing which medications I purchase, discontinuing Botox until further notice, and avoiding labwork and doctors offices like the plague. There is one last ditch effort I can make to try and get insurance to continue and I plan on trying what I call plan desperate tomorrow.
Just for fun, this time after the Botox injections I ran into a slight complication. OK slight as in one of the injection sights became wickedly infected. No I did not go to a doctor, I bandaged it at home until finally I called the neurologist who did the injections because it was swollen, red, the size of a quarter and had an open sore in the center. Charming, I know. He gave me some directions and it seems like it may be slowly healing. I have had severe cellulitis before when an angry ghetto spider bit me in Pittsburgh, so I know what to look for and how much it sucks. That time I looked like I was smuggling a golf ball under my skin and there was a fun red line wrapping up my arm. This is no where near that bad. Although I do want to bring in the next of kin for the ghetto spider for questioning, just to rule them our for revenge. :)
Last time I promised a more up beat and witty entry and well, you can thank the Government for the fact that that one didn't arrive yet. I will try again later this week.

Welcome Spring?

2011-03-22T23:33:00.002-04:00

On Pins and Needles

2011-03-03T18:43:00.000-05:00

Yesterday was round three of the Botox injections, and hopefully not the last. Hopefully whatever replacement I find for my ending health insurance will cover Botox as it has been a tremendous benefit and provided relief. The photograph above is of the very old EMG machine used to check and make sure the Botox needle is in the right location prior to injecting medication. I liked the creepy mad scientist look it gave in the photo. :)
So the injections went as well as can be expected, and I am actually grateful for the fact that I have sensory loss in my legs because looking at him using the muscle to bend the needle back behind my shin bone it occurred to me that this should probably be painful. Yes, I supervise and watch because when anyone is coming at my body with a needle that size I prefer to monitor exactly what they are doing with it. Plus it is a control thing. I am noticing a pattern though. All three times after the injections I have crashed within a relatively short period of time. Yesterday was the shortest as I was not out of the office building and I was starting to feel dreadful. We stopped to get me something to drink so I could load up on meds, and then I focused on breathing during the hour and a half long drive back to my house. The drive sucked. By the time I got home I was beyond pale with a lite tint of green around the edges but I had managed not to vomit in my Dad's truck, for which I think I deserve bonus points. I was knocked out pretty much for the rest of the day. Today I am hung over not just from the crash but the day after Botox hangover - sore weak muscles, flu like feeling, low grade fever. I slept until noon today, woke up long enough for a cup of coffee, and then slept until 4:30pm. I will try writing a more witty, insightful, and informative entry some time this weekend but I am exhausted and foggy from the combo hangover. My poor legs look like I went to a fencing contest in Lilliput and lost. Thank you for all the prayers and support!! I am so blessed!

Quagmire and a Zombie

2011-02-19T23:58:00.000-05:00

I was notified via a little handwritten note attached to a form I requested from my former school district (Dante's Inferno level 14) that my COBRA health coverage runs out as of March 31. Nothing like a little warning here. The really annoying part is that without health insurance, especially prescription insurance, I pretty much become a contest to see which major body system fails first. For a while there I felt overwhelmed, as my options are pretty limited and the time is short. This would not be an issue if Social Security had not been such bastards and had just approved my claim and not forced an appeal because then I would have Medicare. Two options have already been eliminated. I can convert my COBRA insurance plan to an individual health care plan, but insurance is apparently for the healthy. Once I met the $2500 deductible, I would pay up to $100 per prescription until the insurance company had paind $2500 and then it would be all on me. Two of my prescriptions added together would take out the $2500. It allows a gracious 2 physicial visits per year. Something tells me Botox and wheelchairs and leg braces are not covered. I then checked to see if I could be added on to my father's insurance plan as a disabled dependent, but he is now on Medicare and so that is a no go. I am down to throwing myself at the mercy of the state and praying that there is an answer. I have faith that God will provide an answer, as He has never failed me before and He is not going to change His ways now. Even though it feels like I am in the middle of a quagmire, barely able to lift a foot without losing my boot to the muck, I know He is creating a way. Prayers are always appreciated.

Zombies are real, and I had the bizarre chance to meet one this week while having my blood drawn. Apparently they are drawn to Vampires. I was having my blood drawn, half listening to the conversation in the curtained area next to me because they were talking as if they were on a Broadway stage without microphones. Suddenly I hear the man make a proclamation that startled me.
"And I have rigor mortis!"
Now being the daughter of a large city homicide detective, I am relatively familiar with rigor mortis. Being a word nerd, I am relatively familiar with the root word of mortis. If he has rigor mortis then he definitely wins the prize for having the worst day ever. Considering he was breathing and talking, and I later saw him shuffling down the hallway, I can say with some certainty that he is not fully dead. This leaves one of two choices. He is out of his mind insane or a zombie. He never called out for brains, but given the cumulative IQ of the staff it would have been a meager snack for him and my brain is so scrambled it probably would cause an ulcer. I am guessing the guy is a little stiff in new situations and sticks out a bit at parties. I wonder if I get a diagnosis of rigor mortis of Social Security would approve me then? :)

Randomimity in Winter

2011-02-11T22:48:00.000-05:00

I am totally stuck with "nothing worth writing about" block, but I want to put something up here. Thus you will be subject to the random sparks of my mind as it tries to kindle a fire to keep itself warm because it is once again below zero outside. Now I get that I live way above that Mason-Dixon line, but does Mother Nature need to keep rubbing my face in it and giving me a white wash? If we could get the windchill into a positive two digit number I would be her new bestest friend. I lost one of my wheelchair gloves in the vast black hole that is Walmart, which means I now have one pair so when my hands get soaking freezing cold and wet from the slush that no one gives a darn about doing anything with anymore I have no other gloves to change in to. I suppose I should shake the money tree extra hard and buy replacement gloves, but dang it - who would find and keep a single fingerless glove? And its not like it was brand new, it had been put through its paces for a while and was nicely broken in.
I finished the experimental dosage of massive antibiotics to see if we could eliminate an infectious cause for my daily fevers and so far, so good. I did manage to acquire a sinus infection while on a broad spectrum antibiotic, which amazes me but shouldn't as my immune system really does suck like that. And this time of year is like playing craps every time I go out because I am allergic to the flu shot and I rely on public transportation - oh what a bad combination that is, being unable to get the vaccine and then immersing myself in a mobile petri dish of horrors.
Speaking of the joys of the mobile petri dish, I had a woman who was using a motorized scooter sitting next to me on the bus and she felt some strange compulsion to tell me her life story. She also kept patting my arm. Then she looked at me expectantly like I was going to reveal the deep dark secret of how I became disabled and how hard life is for me. I just looked at her, smirked, told her "Yeah, I caught a bad case of dystonia" and pulled out my cell phone to play WordTwist. She visibly sagged in disappointment over the fact that I was not giving her at least an equally juicy story full of horrors and "poor me"s. Sorry lady, I had just done battle through Walmart, sans gloves, and I was in no mood to have a Hallmark moment, or a Mallox moment.
I think maybe this weekend I will finally take down the small Christmas tree that is still sitting on the craft table in my bedroom and put it away. After being hesitant to do much for the holidays this year, I am now too lazy to take all of the ornaments off of the little sucker and pack it up. It is oh so tempting to just cut out some hearts, stick them on, and make it a Valentine's Day tree, then repeat with Shamrocks for St. Patrick's Day, Eggs and flowers for Easter, etc. But eventually I do want my craft table back. It is also very tempting to just shove the entire thing in a box, ornaments and all, but I know that next December I would be very angry with myself for that little stunt. Sad thing is, I am not really ashamed of still having the Christmas tree up, as much as almost proud in a twisted sort of manner. :)
I will hopefully be back soon with more insightful, thoughtful or at least funny insights. Like the fact that the punk who decided he was done with his slice of pizza at Walmart and chucked it over the shelves from his aisle into mine where it landed dangerously close to me is lucky he can run faster than I can wheel or I would still be picking his DNA out of my tires. Or the fact that the people most likely to help you when you are in a wheelchair and can't reach something or drop something or get stuck in, say, 14 inches of snow are women of childbearing age. It brings out the mothering instinct. Men rarely help unless they have a woman with them that they want to appear especially chivalrous for, or I flat out ask them and they get a neat deer in the headlights look. Sometimes I like cornering a guy just to see that look when I ask for help. Its like I am asking for help getting dressed instead of reaching the milk.

I Want One!

2011-02-05T19:30:00.000-05:00

I have wheelchair envy. I want a Tank-Chair wheelchair as shown above. This thing is awesome! It can handle snow, like the 14 inches we received this past week on top of the foot or so already on the ground, and its snowing again today! It can handle sand and water so beaches are accessible!Wet, slippery pavement is no problem! And no one is going to be stupid enough to get in your way when you are driving down the aisle of the local store in one of these!! If I ran over toes in this thing, I would most certainly get the person's attention!! And leave tread marks behind!

And So I Ran Her Over

2011-01-25T20:46:00.000-05:00

When you utilize public transportation, you are handed some of the best comedic experiences of your life for the low price of $0.35 each way - along with the pleasant odor of unwashed humans and a host of germs that have mutated to wipe out entire populations. Today I was greeted by the call of "hey redhead", which did a lot to endear me to the little old lady right from the start as I am still in therapy over the multitude of Little Orphan Annie jokes I underwent as a child. She then immediately begins to put me through the Spanish Inquisition regarding my apparent disability.

"How long have you been in a wheelchair?"

"You sure do have a mess of contraptions on your legs. What are those?" (THOSE are my KAFOs that cost a small fortune and which enable me the movement to kick you, should you come closer)

"What do you mean you got sick?" (Um, my body stopped working right?)

"Can they fix you?" (I don't know, let me call the vet and ask for a price on that. I have a disability, I am not broken.)

"What did you do before you were confined to the wheelchair?" (I am not confined to anything, I utilize a wheelchair which allows me access to the world. I don't see any ropes tying me up in it!)

"Do you live alone?"

"You live JUST with your mother? Where is your Father?"

This is an abbreviated version of about twenty minutes of her interrogating me about my disability, my use of a wheelchair, my braces, my life in general. I bit my tongue and decided it was better to educate her than to let rip with any number of the smart remarks I had in mind, including the basic "this is none of your damn business". However, she began to refer to me as "Oh you poor pitiful thing". I HATE pity. Pity is cursing in my world. Empathy is appreciated, treasured but flat out feeling sorry for me and thinking you are better than me because I have a disability pisses me off. She started to use "Poor pitiful thing" as if it were my name. I bit my tongue. I took deep breaths. And then, when I was getting off the bus I ran over her toes. The poor pitiful thing just couldn't steer that cumbersome wheelchair she was confined in well enough to avoid her toes, especially with those enormous contraptions on her legs. :)

One of These Things Is Not Like The Others

2011-01-25T20:08:00.000-05:00

I received this award from Lynn at Autism Army Mom.

Here are the rules for this meme (apologies for the original award but I changed some of the language to make it appropriate for my journal):

1. You must proudly display the absolutely disgusting graphic that I have created for these purposes. It's so bad that not only did I use COMIC SANS, but there's even a little freaking jumping, celebrating kitten down there at the bottom.It's horrifying! But its presence in your award celebration is crucial to the memetastic process we're creating here.

2. You must list 5 things about yourself, and 4 of them must be bold-faced lies. Just make some crap up, we'll never know; one of them has to be true, though. Of course, nobody will ever know the difference, so we're just on the honor system here. I trust you. Except for the 4 that you lied about.!

3. You must pass this award on to 5 bloggers that you either like or don't like or don't really have much of an opinion about. I don't care who you pick, and nobody needs to know why. I mean, you can give a reason if you want, but I don't really care.

4. If you fail to follow any of the above rules, I will hunt youdown and harass you incessantly until you either block me on Twitter or ban my IP address from visiting your blog. I don't know if you can actually do that last thing, but I will become so annoying to you that you will actually go out and hire an IT professional to train you on how to ban IP addresses just so that I'll leave you alone. I'm serious. I'm going to do these things.

**NEW** 5. This one isn't actually a rule, but once you do the above, please link up to the Memetastic Hop so that I can keep track of where this thing goes.

My 4 lies and 1 truth:

1) I am a member of a secret society. Now I must kill you for knowing.
2) I fell while walking across the stage at my college graduation, showing everyone my underwear.
3) I legally drank before turning 21.
4) I have a tattoo above my buttocks that says "Made in China".
5) I once made my niece clean the bathroom floor with her toothbrush.

I pass this award on to anyone who wishes to participate.

Ups and Downs

2011-01-23T18:20:00.000-05:00

I wish I had something brilliant or hysterical to write about, but I have spent the last week since my Dysautonomic crash recovering and sleeping 16 hours per day or more. That was definitely one of my worse crashes and one I would like to avoid. The actual written protocol that I have in my medical binder of records and other pertinent information, because doesn't everyone have one of those, to treat a crash is to carefully infuse fluids until my blood pressure begins to rise to my normal, treat pain as needed, and call the neurologist with any questions or concerns. Living in a small town, the local drs have no familiarity with someone as complicated as me and thus my neuro wrote out a treatment plan. Also unfortunately triggers are not easily avoided. They include things like getting too warm or too cold, being in a loud environment for too long, bright lights, flashing/flickering lights, stress both emotional and physical, low blood sugar, forgetting to drink enough (because I have no sense of thirst), and pain. Stress can actually include positive emotions like being excited about something. Things I can no longer do because of the triggers include going to concerts (I love music), going to movies in theaters (I have about a 60/40 odds of triggering a crash if I go see a movie, not in my favor, from the rapid flickering of the film and the loud soundtrack), attending any crowded events, being outside in summer. Yet even if I avoid all triggers I can still crash for no apparent reason, seemingly out of nowhere. This is something that it took a long time for my family to understand, that I really was sick at virtually every family get together because it was so stressful, loud, and crowded. Now the stress has been reduced a LOT, and as you can see from the video of the wrapping paper fight I did fine this year.
This coming week I have two doctors appointments that I have delayed just a wee little bit. So I have been having almost daily fevers for the past, um, two months or so. Sometimes Tylenol works, sometimes throwing in an illegal Ibuprofen finally works, sometimes they are stubborn. I know dysautonomia impacts my body's ability to regulate temperature so I am going with that being the cause, but I have a feeling my internist is going to be a little unhappy that it has taken me two months to come in and mention this to him so we can eliminate other possibilities. Actually I am taking bets between the internist on Monday and the hematologist on Tuesday as to who is more angry with me for my "ignore it and it will go away" approach to medicine. Hematology is my yearly checkin since I am on Lovenox (injections of blood thinners) for Lupus Anticoagulant (blood clotting disorder) after having had a stroke (RIND) when pieces of two blood clots in my arm broke off and went through the hole in my heart (PFO - we did not know about it until afterwards) to my brain. I think I may be bounced back to the GI doctor/nutritionist since even though I have recovered the ability to swallow, my stomach seems only able to tolerate simple grains like corn flakes, bagels, toast, corn chips, and rice. If I eat anything more complicated, especially a protein, I become very nauseous (Thank God for Zofran!) and my stomach hurts. Yet I am gaining weight as if preparing for a famine.
I will try to write something much more entertaining this week. If nothing else I can write about freezing to death tomorrow when temperatures are in the single digits with negative windchills and I am waiting for a handicap accessible bus to take me to my doctor's appointment and the fun of wheeling through snow and slush. Tomorrow I will be wearing enough layers that I will be able to do a wicked imitation of the kid in A Christmas Story "I can't put my arms down!".
Thank you for reading this!! You Rock!!

Anatomy of a Dysautonomic Crash

2011-01-18T23:06:00.001-05:00

Yesterday I experienced one of my more severe, most dreaded Dysautonomic crashes (also known as crises but I prefer the term crash as it is very much like suddenly slamming into a brick wall doing 60 mph and crumpling to the ground). I had simply gone to the pharmacy to pick up three much needed medications and this act resulted in my body being unable to process the input it was receiving and I went from functioning to slamming into that brick wall in about 10 seconds flat. The typical crash goes like this - my blood pressure peers over the edge, contemplates the alternatives, and then plummets. It is secretively a sadomasichistic entity that loves to torture itself and the body in which it dwells by climbing peaks and throwing itself off of them, never knowing where it will land. I develop a headache that makes my migraines look appealing and that is impervious to pain medicine. Laying absolutely flat - no pillows, no incline at all- in a pitch dark room and not moving a muscle can take a little of the edge off of the headache. I am dizzy and if I try to move into an upright position frequently tap dance very close to passing out. Nausea follows the headache, and last night I ended up vomiting. Impressively, I vomited in the dark into a trash bag lined garbage can and did not miss a drop - nothing on the bed, nothing on me. I am a professional. My heart rate does weird things during these crashes and it frequently alternates between skipping beats and throwing extra ones in for the fun of it. This started at about 4pm yesterday and the fun did not end until sometime around 6am. I finally fell asleep around 3:30am after being able to slip some meds into my stomach and convincing it to keep them down, but at that point I still had the massive headache.
Today I am in the "hangover" phase in which it feels very much like I have done 10 rounds in a boxing ring, then gotten run over by a semi truck as I crawled home. I slept basically all day today as my body tried to reset itself, and I have been having to try to push fluids to make up all the ones I lost out on. If I am going to feel this hungover, I at least want the night of drinking before hand and the embarrassing stories to go along with it. Preferrably with pictures and or video. I have never even been near drunk, but I know what a hangover must feel like, including the little man who pranced in a field of manure and then danced a jig in my mouth while I slept last night. Evil little creature! The frustrating thing is that, while I can avoid known triggers of these crashes, they still happen out of nowhere and slam me hard and fast and viciously. All that seeking ER treatment would do would establish IV fluids, there is no other treatment plan for these crashes as any medication administered has a risk of triggering another extreme reaction. I do have access to zofran, pain medication, and reglan at home but they only do so much. This is a part of living with Dysautonomia that few people see, that few people understand, and that does not neatly fit on a checklist of daily living skills for assessment.

Disqualified

2011-01-13T22:32:00.000-05:00

According to the government of this great country, I do not qualify as being disabled. I have been denied Social Security Disability and now must begin the oh so fun process of appealing. Looking at my alphabet soup of medical conditions and the severity of the dysautonomia and dystonia I would really hate to see how ill they would like me to be for me to qualify on the first go round. I am working with a company that deals with Social Security Disability, courtesy of my Long Term Insurance company, and so today we began the additional reams of paperwork over the phone. I think I am now responsible for killing an entire acre of the Amazon Rainforest for all of the paperwork completed. My medical records may be responsible for half of the deforestation. So as she is asking me questions we have the following conversation.
Her: Could you do your previous job today?
Me: **Laughter** Oh wait, you are serious? Lets see, I can't hold my arms over my head to blow dry my hair but sure I can pick up and position children weighing 50+ pounds. It was full contact teaching, not sitting at a desk and reading aloud to students.
Her: Could you work for 8 hours?
Me: **Laughter** In one day? Or across a week? There are days my blood pressure is so low I can not sit upright, and I take two strong antinarcoleptic medications and still sleep 16+ hours a day most days. Plus I don't have the ability to sit upright that long without severe pain.
Her: If you could work would you?
Me: **Indignant snort** Do you really think that at 29 I would rather spend most of my days stuck in this house or doing the job that I got the best education in the world to prepare for and loved more than anything?

I think one big issue with my application is that even with all of the diagnositc testing and specialists we have yet to arrive at a clear cut diagnosis. We can diagnose the symptoms, we can treat symptoms, but we can not identify the main disease or disorder that is causing all of the damage. It is believed to be something genetic but beyond that we have eliminated but not identified.

My biggest fear, or concern, is that I had been praying to qualify for Medicare before my COBRA insurance coverage runs out. Michigan is a "skip state" which means something like we skip the first appeal and go straight to the second and more comprehensive appeal. This translates to a process that generally takes 7-34 months. Without access to health insurance, it will be a mute point to determine if I am disabled or not. I am holding on as hard as I can to God's promise to provide for all of our needs in His perfect timing.

Insomnia and Internet Access

2011-01-07T02:32:00.000-05:00

Unlike the world's cutest now eight year old pictured above, I can only fall asleep sitting up on the rarest of occasions. In fact, tonight I can not sleep period. I feel like a character in a bad Dr. Seuss book on sleep.
"I can not got to sleep tonight
My sleeping thing is just not right.
I could not, would not in the bed
Not with a fancy pillow for my head
I could not, would not on the couch
That left me feeling like a grouch
I could not, would not on the floor
I can't get down there anymore
I could not, would not with my iPod
Not even after I politely asked God
I could not, would not with a guy
Well only cause none showed up for me to try
I could not, would not count the sheep
They went on strike with Little Bo Peep
I could not, would not with the prescription drugs
At maximum dosage I am not even buzzed
I just can not go to sleep tonight
And by now I am quite a fright
Please sleep let me try you out for a while
Insomnia is not my style!"

As if bad rhyming ala Dr. Seuss was not enough, you now get the priceless opportunity to read whatever comes floatng from the muck and the mire to the front of my addled brain and out my fingers. I probably should not have internet access when dealing with insomnia!

Randomimity

* I actually had to speak the phrase "Excuse me ma'am but could you please retrieve your dog from my leg" this week in the elevator. Apparently her dog did not have a banana in his pocket but was in fact very excited to see me and hopped right up on my foot rests and decided my leg made a hot afternoon date. I just thank God it was a miniature something and not a Great Dane!

* When picking up prescriptions at the pharmacy, the pharmacy tech sees me and automatically goes over to the spot for my last name and searches through it. We hit the motherload as he returned with a sack of meds. The sad part was when he asked me if ten sounded right for the number of prescriptions, not only did I have no idea if that was correct (God Bless Automatic Refills) but I also knew I would be back in a week or so for more.

*According to Social Security I am not considered Disabled. This sucks Ostrich Eggs and means we have to go through an appeal. It also makes me wonder how much more screwed up I need to be to qualify! I honestly think the problem is the lack of a cut and dry diagnosis. That and they are all could use some preparation H in a jumbo tub.

* While at the mall last week, I politely informed a man who kept stepping in front of me that I would not hesitate to run him over. He said I needed a horn, to which I replied he needed a rearview mirror to check before lane changes.

* I am such a total geek/nerd. With the iTunes gift cards I received for Christmas I have been downloading documentaries that I never get to see in a theater because I live in The Middle of Nowhere, Michigan. Just like I prefer nonfiction books to fiction books, I prefer documentaries to regular movies.

* I scared and confused the crap out of a small child while shopping at the mall. There was an item hanging from a high rack that I wanted and no one anywhere to be found willing to help me. However, there was a child about three or four years old staring at me intently from the child seat of a shopping cart. So I did my "Amazing Standing Cripple" act and unbuckled my feet, undid my seatbelt and held on to the rack while I stood up long enough to grab what I needed. When I looked over at the poor child she had a look of pure confusion and shock on her tiny features that in all honesty was hilarious to me. I want to hear how her mommy explained that one to her!

New Year

2011-01-05T18:35:00.000-05:00

I am not a fan of New Year's Resolutions because they are generally unrealistic changes that result in a sense of failure by the end of the month. Besides, if something in my life needs a change why should I wait until a specific day of the year to change it? I do like the idea of an entire year spreading before me untouched, unwritten, unformed, rich in possibilities and hopes and dreams. I like beginnings and fresh starts, but really we get those every morning when the sun rises and we are given another day.
Things I would like to accomplish in the new year are a renewed sense of appreciation for everything in my life. I have recently (starting sporadically last year and consistently in October) begun listing 5 things every day that I am thankful for that are specific or connected to that day. It makes me recognize the multitude of little blessings as well as the big ones. So that is my "resolution". I could add that I would love to try my wheelchair out at a skate park and see how much air I can catch before I (fail to) land, or that I really would like a diagnosis - even a custom made one just to humor me would be appreciated like "yurskreewid disease", or that I would love to watch the weight I have added from taking steroids and other meds to increase my blood pressure combined with limited activity melt away but really I first need to learn to love myself however I am. Besides, failling to launch myself into hang time or getting a diagnosis or lose weight are in a lot of ways out of my hands, but gratitude is within my control.
And so for the record, today I am thankful for all of you who are reading this, for tylenol to bring down my daily fevers (yes, I know I need to call the doctor as these have been going on for over a month), for every step I am still able to take even though they require assistance, for the escape in music and audiobooks, and for hope and dreams.

Traditions: Teaching the Next Generation

2010-12-28T18:34:00.000-05:00

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!

My Grown Up Christmas List

2010-12-20T11:53:00.000-05:00

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!
Love,
Bethany

The Christmas Menagerie: A Well Worn Tradition

2010-12-06T23:26:00.000-05:00

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.

Bah Humbug!

2010-12-04T20:25:00.000-05:00

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.

Botox Round Two and Fun with Neurologists

2010-11-27T22:07:00.000-05:00

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!!

Stone Soup

2010-11-24T22:15:00.000-05:00

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.

The Talking Drum

2010-11-15T23:52:00.000-05:00

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

30 Days of Giveaways

2010-11-12T19:13:00.000-05:00

Check out Ni Hao Y'all and their amazing 30 days of Giveaways!

Discombobulated

2010-11-12T00:45:00.000-05:00

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. :)

The tags that rub

2010-10-25T14:11:00.001-04:00

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.

And The Children Shall Lead Them

2010-10-23T01:36:00.000-04:00

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.

Warning: Exposure to Stupidity May Cause Toxic Side Effects

2010-10-20T01:19:00.000-04:00

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. :)

A Time to Mourn

2010-10-19T22:08:00.000-04:00

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

Notes from the Box Piles

2010-09-16T12:52:00.000-04:00

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 :)

just moved and hooking up

2010-09-10T12:07:00.001-04:00

just moved and hooking up computer is low priority compared to mountains of boxes so will be offline for a while.

Botox: 2 weeks later

2010-09-01T22:50:00.000-04:00

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.

Human Pin Cushion

2010-08-20T00:08:00.000-04:00

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!!

Twenty Nine Years

2010-08-14T22:39:00.000-04:00

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.

Summer Hibernation

2010-08-06T16:52:00.000-04:00

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! :)

Spilling My Guts

2010-07-20T13:52:00.000-04:00

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.

Airing the Laundry

2010-07-16T23:19:00.000-04:00

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!

Escapades in Purple Camouflage

2010-07-11T13:26:00.000-04:00

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????

Odds and Ends

2010-07-08T00:04:00.000-04:00

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!!

Somedays

2010-07-04T01:03:00.000-04:00

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.

Overheard Conversation

2010-07-02T19:06:00.000-04:00

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.

Seeds in the Wind

2010-07-01T14:14:00.000-04:00

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.... ;)

We All Fall Down

2010-06-27T00:05:00.000-04:00

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!

No Dreams

2010-06-17T23:48:00.000-04:00

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

Adaptations

2010-06-15T01:23:00.000-04:00

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.

And the survey says.....

2010-06-13T00:35:00.000-04:00

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?
Hypocrisy

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?
God

When and where were you happiest?
Walking the boardwalk in Ocean City; Hiking

What talent would you most like to have?
Artistry

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)

Dysauto-what?

2010-06-11T00:55:00.000-04:00

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.

Perspective

2010-06-05T23:36:00.000-04:00

This photograph is one that I took of the shadow that I create when I am using my wheelchair. Often it feels like the world views me just as I am in this picture, indistinguishable and defined solely by the wheelchair that I use for mobility. I just felt like this image captured those moments, that experience, perfectly.
- Posted using BlogPress from my iPhone

Speechless

2010-06-05T01:09:00.000-04:00

- Posted using BlogPress from my iPhone
I have been playing with my photos on my iPod and decided to share a few creations. Enjoy and I will be back with a real post soon!

Loss

2010-06-01T18:50:00.000-04:00

"He that conceals his grief finds no remedy for it." Turkish proverb
"Give sorrow words. The grief that does not speak whispers the o'er fraught heart, and bids it break" William Shakespeare
"If you suppress grief too much it can well redouble." Moliere
"The risk of love is loss, and the price of loss is grief. But the pain of grief is only a shadow when compared with the pain of never risking love." Hilary Stanton Zunin
"There is no grief like grief that does not speak." Henry Wadsworth Longfellow

This is going to be a heart-wide-open, raw and vulnerable entry; there will be no attempts made to dress up my emotions in their Sunday best and tie pretty ribbons around the truth nor is it dressed in rags for dramatic effect. It is real, it is pure, and it is honest.
Lately I have been dealing with a grief I have never experienced before, and a grief that is difficult to process or explain to others. I hurt deeply, ache as though my heart may fall apart, have times of feeling bitter anger, and at times am sadly resigned to the situation. I am mourning the loss of so much of my life, the things that brought me such joy and defined who I was as a person and shaped my existence, and the loss of countless dreams that are now forever out of reach. It is not just a loss of what was but a loss of what could have been, a loss of the past as well as the future. In many ways I feel like some part of me has died. I go on with my life, I have good days and days of laughter and treasured memories, but something is achingly absent like a part of me has been cauterized. I don't want that old self to die, I don't want to surrender those old dreams, I don't want to admit defeat and have to allow this to change my life forever when I was so blessedly happy before. For the past 18 months I was able to lie to myself and hold on to the illusion that there was still some chance that there would be a treatable, curable diagnosis identified and I would be able to resume the life I had been living as if it had just been put on pause for a while. Now that I have a diagnosis of Mitochondrial Disease, I have to accept that there is not only no cure but no treatment. That this is a progressive disorder which may continue to steal away parts of my life, continue to rob me of dreams, continue to deny me of aspects of life that I use to define myself. If I did not live my life full out, living in every moment, living with no regrets, living at 100% with passion I would not have so much to grieve, but then I would not have so much love in my life either. It hurts more because I live more, I push boundaries, I defy expectations and definitions, I play by my own rules and love openly - love life, love others, love God.
Yet I mourn so many losses. I mourn the loss of my independence, for I have always been fiercely and proudly independent. I miss being able to just decide to go somewhere, to go exploring or on a short day adventure and not be limited to the ability of others to transport me. I mourn the loss of my physical abilities. I will never again chase after my niece and scoop her up in my arms as she squeals in laughter. My feet will never feel the rocky ground beneath them as I hike up the side of a large hill, using my arms to pull myself upward. Kneeling on a tiled floor I will never again guide the feet of a child as they take their first tentative steps. I mourn the loss of many of the things that brought me great joy and served as ways by which I defined myself - my work as a teacher and a volunteer, my passion for photography (it is much harder to access places to photograph and the angle is different in a wheelchair), my love for nature and hiking and exploring. I mourn the dreams lost, large and small. Dreams of ever being allowed to provide foster care or adopt children (I long ago understood that I can not risk having children of my own), dreams of hiking parts of the Appalachian trail, dreams of missions trips, dreams of dancing someday at my wedding, dreams of classrooms full of children.
I recognize that I can, and am, creating new dreams and a new sense of self but for now I am still mourning what I lost. The wound where it was ripped away is still too tender and too fresh to withstand the abuses of life without pain. It takes time, it takes patience, it takes growth of those new dreams and that new hope, and it takes acceptance of the grief.

A glitch in the system

2010-05-27T14:38:00.000-04:00

Apparently this year there is going to be very little of the season that I adore called "Spring" and a great deal of the season that my body detests called "Summer". The dysautonomia leaves me rather like a reptile in that I can not adjust my body temperature very well, so when it is hot outside I am very prone to heat exhaustion. It would help if my body could make the effort to sweat, but by the time we get to that point I am already in trouble. While I also am miserable in extreme cold, I prefer winter over the heat of summer because you can always put on layers but you can only (legally) take off so many. Another huge issue that arises to the forefront this time of year is one that is virtually impossible for someone with a functioning brain to comprehend. I do my best to explain it, but it is as if I am from some weird other planet. I do not have the capacity, ability, brain signals, awareness to feel thirsty. I can and have easily gone 24 hours without drinking anything other than the sips of water required to take my medication. (On a side note, I also do not have the capacity, ability, brain signals, awareness to feel hunger or full like normal either. ) Obviously this poses a big problem because I am rather fond of my kidneys and they already take a beating from all of the chemicals they are asked to process from my medications, not to mention we know at least one has a cyst on it. Also, with my extremely low blood pressures being dehydrated is like playing on a tightrope blindfolded without a safety net - just a bad idea. To explain what I mean by not feeling thirsty, I never get a signal that my body requires liquids no matter how desperately it may indeed need them. When I do drink it is because I am forcing myself to do so or because a beverage tastes good. If my mouth is dry I chew gum or swish a small amount of water and swallow it and then have no need to drink more. To try to understand, imagine you have just eaten the largest meal of your life and are absolutely and unquestionably full. Now someone sets down a 7 layer chocolate cake in front of you and hands you a fork, telling you that now you must eat your dessert. You have no desire to eat that cake, your brain is not telling you to eat that cake but everyone else is telling you that you need to eat that cake. This is sort of what it is like for me to drink something - I feel no need to drink, because I feel no need I often end up feeling nauseous from drinking a full glass of something because my body does not recognize the need for the liquid, and I am content without touching it yet everyone is telling me I need to do it. I can't quite imagine what thirst feels like, but I do recognize that my brain is obviously malfunctioning and I think I understand the concept from reading and studying development. So we have tried numerous things to get me to drink. First there was the theory that I just needed to do it - the Nike approach "Just Do It". That worked as well as one would expect. Then there was the theory that what I needed to do was carry a water bottle everywhere with me and take a drink from it whenever I remembered. Here's a hint, if I don't feel thirsty do you think I remembered the water bottle let alone to drink from it? I left a trail of countless water bottles in my wake each with maybe three sips taken before I totally forgot. Now I am supposed to be on a 3 hour timed schedule. Every three hours, when I go to the bathroom (my neurogenic bladder requires timed elimination) I am then supposed to get myself something to drink and drink it. Any guesses on how well this is going? Some days I do really well, and other days I am lucky if I get 16oz in over the entire day. What is really bad is that I take Topomax, which comes with a big bold warning that it is imperative to drink while taking it because it is known to cause kidney stones. Oops. Thankfully so far my kidneys show no damage from a lifetime of abuse, and they keep chugging along. But how much longer can they take this? At my follow up MDA Clinic appointment this is an issue that I know we need to seriously address and problem solve because 1) I am constantly on the edge of significant dehydration, 2) this is not helping my low blood pressure, 3) I feel better when hydrated, 4) kidney stones would be bad, and 5) my kidneys are the only ones I have and I think they have been abused enough.
I should write another time about how weird it is to have an abnormal/absent sense of hunger and abnormal/absent sense of full and the joys that brings including frequently forgetting to eat until my blood sugar plummets. I don't do much better eating on a schedule than drinking on one most days. :P With that glitch you would think I would be skinny, but nope - I have my back up belly in case the dysphagia gets severe again (that's what I am calling it, so it seems purposeful instead of just weight gain from the inability to exercise anymore).

Etiquette Lessons???

2010-05-19T00:53:00.000-04:00

Recently the Christopher and Dana Reeve Foundation conducted a survey of visitors to its website and web communities and published the results of the Top Ten Most Annoying Things for Wheelchair Users. This stirred up a lot of controversy, including debates over whether accessible stalls were reserved for individuals with disabilities or were fair game for anyone at any time and over whether van accessible spots should be saved for those with wheelchair vans who otherwise can not exit their vehicles. I got thinking about my own experiences, and I decided to make my very own list of Annoying Things About Being in a Wheelchair based on true life experiences. I think I may have done this before, but if so it is time for an update. :)

* Pardon me, do these wheels make my brain look small? - Apparently utilizing a wheelchair for mobility immediately divided my IQ into its square root because the moment people recognize that I am in a wheelchair, they raise their voices up at lease one octave like you do when talking to a small child and they oversimplify their voices. If at all possible, they avoid talking to me and instead try to talk to whomever is with me instead as if I can not speak for myself.

* I am not hearing impaired, but even if I was your yelling would only make you look like an idiot. - For some reason I have yet to figure out, people have some compulsion to yell at me because I am in a wheelchair as if because my legs do not work right I must also have trouble hearing. This one can be entertaining because I enjoy watching people make idiots out of themselves.

* Don't pity me, buy me a drink!- Save the pity for someone who wants it or needs it. My life is rich in all the ways that matter and I am abundantly blessed. Don't compare me to some standard that you feel is the definition of normal or "good". If you feel bad about the situation I am in, talk to me; get to know me, ask questions, learn that it is nothing worthy of pity and that I am just a person with hopes and dreams and good days and bad days like everyone else. Learn about my disability, learn about me - understand but do not feel sorry for me. I am too busy living most days to feel sorry for myself!

*Having a multitude of children is not a disability. - When there are normal bathroom stalls open for usage, it is rude to take and use the one accessible stall because you have a brood of small children. Being a parent is not a disability, it is a lifestyle choice. I can not choose to use one of the regular stalls if I wanted to and so am stuck while you allow each of your children a turn to try to go potty and to flush, often more than once because it is just SO COOL! By the time I get the message to my brain that I need to use the bathroom, I do not have time for you to negotiate a potty treaty that would make the Russians proud.

*If you stare long enough I just might do a trick!- I understand that you may not encounter someone in a wheelchair on a regular basis, let alone someone who uses the type of wheelchair that I do, let alone someone who wears capris and shorts that allow for my AFOS to be visible in summer months. I get that the natural instinct is to look. There is a difference between an inquisitive look and a gaping stare. Gaping stares from small children do not bother me; gaping stares from teenagers and adults are just rude. If you are curious ask a question, I don't mind explaining things and would rather educate you than be a side show freak on display for your entertainment.

*Do Not Pat Me On The Head. - Enough said.

* This is my dance space spaghetti arms!- Treat my wheelchair as your would treat a part of my body and do not lean against it, grab hold of it, or hang on to it in such a manner as to prevent me from moving. My wheelchair is not there to be a convenient place for you to hold on to on public transportation, for you to lean against, or for you to hold onto while engaged in conversation turning me into a virtual prisoner. Respect my space. Never start pushing my wheelchair without first asking and receiving my permission. I don't run around scooping up people who are walking and wheeling them around on my lap so lets be fair.

* Look at you standing there all Homo erectus! - Avoid the temptation to comment on how well I manage to maneuver in my wheelchair like this is some extremely astonishing accomplishment. I do not praise you for how well you stand and walk.

* By any other name would not smell so sweet - I hate being referred to as a wheelchair. I am no more a wheelchair than someone who is walking is a pair of sneakers or high heels or flip flops. I am not the tool I use to access the environment around me.

* I escaped out the back door- Please do not ask me where my parents are or who I am with at a store or other public location, or if someone forgot me there. I am fully capable of utilizing public transportation and also of managing to arrange for transportation. I am almost 29 years old, and while there are days I can not go anywhere, when I do get out I do not need a constant babysitter. I am still capable and coherent.

* Do you have a license for that thing?- yep, it came in a cracker jack box. If I run your toes over I get bonus points.

Medical Monday

2010-05-18T16:12:00.000-04:00

Because we apparently missed a test to run on my brain and body, yesterday I had an EEG conducted prior to my appointment with the Dr. E to consult on the administration of Botox to my legs and feet. I drew the first lucky card of the day and became a guinea pig for someone just learning how to conduct EEGs. While she was very nice, I think I ended up with at least a dozen extra red pencil marks on my forehead and scalp as she measured and remeasured. Then she very slowly applied the leads using the theory that more adhesive and conductive goop is always better. Have I mentioned that I am allergic to all things adhesive? So we finally get approval from her supervisor and do the EEG testing. Results - my brain is using its wires according to plan. I would have been really upset had there been any signs of seizures or abnormalities considering that I am on a mega dose of Topomax (antiseizure drug) already for migraines, and another antizeizure drug that helps control muscle tone. As a result of the overzealous technician I had a delightful bulls eye on the middle of my forehead from her firmly and securely attaching a lead there. My hair was also glued down to my scalp, but luckily this was not my first go round with this test and so I had brought a hat. Washing my hair last night took about 20 minutes, a lot of scrubbing, and a lot of warm water to soak off the goop and the shreds of gauze still stuck to my head and be able to get my fingers through my hair let alone a hairbrush. It still itches today, so I think I may need to do a good scrub, round two this evening.
Then I had my consult appointment with Dr. E to determine whether I qualified to receive Botox treatment in my legs to hopefully assist in releasing some of the excess tone. However I once again drew the lucky card and was given a Medical Student to play with first. She was a cute little thing and I wondered if her mommy knew that she was playing doctor. I tried hard not to laugh when she sat down and eagerly asked for my medical history. Instead I politely informed her that she would need more that that one sheet of paper if she wanted my entire history and that perhaps we should agree upon the cliffs notes version. After going over a condensed medical history, and explaining to her about how I am impacted by Dysautonomia, I then became exhibit A. I had to take off my shoes and braces so she could see my distorted and contorted feet. She asked me the stupid questions of the day.
"Where did you buy those? (pointing to my AFOs)"
"Those are custom made AFOs made by X Orthopedics."
"So did you get to choose the design?"
"Yep. I figure people are going to stare anyway, so I might as well give them something interesting to stare at."
Uncomfortable silence on her part....crickets chirp.....I try hard not to laugh.
"So to put your shoes back on do you have to straighten your toes?".
"Um, I have tried that and the thing is, they just don't straighten. So even with shoes on my toes are curled like this."
"So can you straighten your feet?"
"I can pull them towards neutral for brief periods of time, but this rotated position is how the muscles pull them. I can only hold them for a very brief (seconds) period of time in any other position because it is like pulling against a gigantic, powerful, and tight rubber band."
"So it is more comfortable the way they are (turned under)?"
"No, it hurts like this. My ankles hurt, my toes hurt, my legs hurt. I would prefer they not do this, but the extreme tone in my legs pulls them into this position. Does this look comfortable?"
"oh. Um, not really."
When she did the part of the neuro-exam to check for sensitivity, I did not have the heart or the patience to correct her and explain that you poke with the pointy end of the safety pin, not the rounded end. I am curious how she got into medical school and am just really hoping that she just began her neuro round. I had to play nicely with her for an hour. Then the real doctor came in and it took all of a ten minute discussion to decide that yes, I would in his opinion benefit from Botox injections. He wants to target the muscle on the back of my leg, one behind my shin bone (I am trying not to imagine what is involved in accessing that one!) and one or two others. I will receive the injections at a yet to be made appointment once they receive approval from my insurance and then order the proper dosage and quantity of Botox. Dosing is not an exact science, especially since this is an off label usage for it (which I found strange since I am more familiar with using it in this manner through teaching kids with spastic cerebral palsy and other disorders that caused excessive tone than cosmetic reasons) so the first dosage is like any other medication really - the best calculation but each person reacts differently. It takes 2-3 weeks to see results and results peak at about 2 months. I do plan on warning the doctor when he does the injections that a recent episode of Mythbusters, which proved that women can tolerate more pain than men and redheads more than any others, also showed that cursing increases pain tolerance by 30% and I may take the liberty to test that theory myself - afterall he is going to be injecting a muscle BEHIND my shinbone!!
All added together I was at the neurology clinic for 3.5 hours - 1 of which I spent as Exhibit A for the medical student. Because of my "unusual" medical history and presentation I tend to be lucky and draw med students and interns and residents frequently. But all in all it is good news - the wiring works in my brain, and we have a new tool to try and reduce the spasticity/dystonia in my legs.

This Crazy Thing Called Life

2010-05-14T15:15:00.002-04:00

* Photo from the last hike I took in September 2008, Prince William Forest.*

I had all sorts of plans for splendid entries on this journal (I still cringe at the word blog, I do not know why - maybe because it rhymes with "frog" and I have serious issues with amphibians?). Entries about the mixed emotions of sending off the blood work for the DNA testing for mitochondrial disease, entries about the amazing day that Mother's day turned out to be, entries about how when you are in a wheelchair you are all too often invisible both literally and figuratively and how this nearly turned me into a hood ornament for a Buick. But this crazy little thing called life kept stepping in and changing up my plans. So now I will be presenting My So Called Life, the abbreviated version.

* A week and a half ago I finally had the opportunity to access a hospital based laboratory to draw the single (Large!) tube of blood required to run the DNA testing for Mitochondrial Disease. The technician was very pleased with how "idiot proof" (her words) the self contained kit was, and I was pleased that I did not have to put that theory to the test at the scary, run by idiots local hospital. The downside of living in a very small town is that the medical care locally is sketchy at best - my primary doctor is a good 45 minute drive away, my specialists are about 90 minutes away. So now comes the waiting for results. I have mixed feelings as to what to pray for with the test results - the Dr is confident enough in his diagnosis that he has registered me to receive services through the MDA, and this diagnosis is the first thing that explains my entire medical history so a positive result would be a nice confirmation and would spare me the need to undergo a muscle biopsy. Given that I am on blood thinners, a muscle biopsy would be a bloddy mess and given that I have severe dysautonomia, a muscle biopsy which requires sedation would be a tightrope walk. Yet it just feels wrong to pray for test results to be positive for a disease that has no cure and no treatments. Not that any result is going to change what is going on inside of my body - either way there is a progressive disease process active and frequently making its presence known.

* On a much happier topic, Mother's Day was a day filled with priceless memories that I will treasure forever. My brother managed to orchestrate a series of surprises for just about everyone involved and had my two aunts come in to town to meet up with us for lunch. Neither my mom nor I knew anything - we thought we were going out to eat with my brother's family-, and my one aunt did not know the other was coming. I forgot to take my camera so I have no pictures but it was so much fun. Someone at the restaurant made the mistake of positioning the 9 of us front and center in the restaurant, obviously not comprehending the fact that any family gathering is a loud and rowdy affair. :) I spent half of the time at lunch at the "kiddie" end of the table with my nieces and nephew - well my nephew had his iPod in his one ear and was busy texting so the only time he spoke to me was to call me a tattle tale when I warned his mom that he has sabotaged her drink (I called him a teenager and he returned to sulking), and my older niece was constantly running from the table to check the score of the Tigers baseball game when she was not sulking because she stayed up too late the night before so really I visited with Little Bit. Little Bit is highly creative and can entertain herself for hours with just about any found object, so we were thrilled with crayons and a piece of paper but I did have some trouble following the ever changing rules of her games. Suspiciously, the rules changed every time she started to lose. :) I spent the other half of the time at lunch with the "Big People" at the adult end of the table where there was much laughter. After lunch, my one aunt came back to my mom's apartment to visit and we had a great time. I also had the honor of giving my mom a very special present that has a great deal of meaning to both of us.

* Being in a wheelchair is often like donning Harry Potter's Cloak of Invisibility. Suddenly people talk over your head, to the person with you, and about you but never to you. People will look everywhere but at you if you do talk to them, and they feel some bizarre compulsion to both shout and to revert to near baby talk. Because I obviously became hearing impaired and lost more than half my IQ points the minute I sat down in my wheelchair. What I failed to realize until the other day was that I am also literally invisible to many people. I was rolling in a parking lot at a large superstore, when all of a sudden a large vehicle whips out of a parking spot directly at me at about 30 mph. I used my emergency brakes (my hands) and my horn (screaming) to alert the driver and by the time we both came to a stop there was no more than an inch between my knees and her vehicle. I must admit that with enough adrenaline pumping through my body to pick up and toss her vehicle, I used a few words that I would not normally use in public and asked her whether or not she had seen me. She protested that I was in her blind spot, to which I answered that this is the reason as a driver you check your blind spot before whipping out of a parking spot and I questioned whether she should still be allowed to drive. I am now skitterish to even venture into parking lots and Lord help me crossing streets!!

* This week I got up, bathed, dressed, and out of the house four days in a row - Sunday for mother's day, Monday to pick up a prescription, Tuesday to go shopping for warmer weather clothes (last spring/summer I was still skinny from the dysphagia, this year definitely not so much), Wednesday to pick up the remainder of the prescription that they had not bothered to order in time for Monday and to return to my apartment (I had been staying with my mother for about 2 weeks). None of those days except Sunday and Wednesday involved getting up before noon, and those days I got up at about 10:00am. I was back home by 4:00pm every day. Yet my body is making me pay for so much activity. The dysautonomia is having a temper tantrum - I can not maintain my body temperature anywhere near normal, my blood pressure is running lower than my new normal, my GI motility is all messed up. The neurological disease is collecting its toll with headaches, severe muscle pain, and an increase in the dystonia and poor muscle control and balance. We are working out the terms of a peace treaty now, and I am hoping that by next week all will be forgiven especially since Monday I have a Dr appointment to evaluate my legs for Botox treatment as well as an EEG. I highly doubt the EEG will show anything because even if I were to have seizures I am on enough antiseizure medications that it should stop anything fast.

* I realize this post has been neither stunning nor brilliant, nor particularly entertaining. It has been long, if that counts for anything :) I shall work on the next entry and try to achieve brilliance, creativity, stunning humor, and perfect length. Hey, it is good to have goals :) Bonus points to you for making it to the end of this!!!

Blogging Against Disablism Day: More than a Mascot

2010-05-01T11:07:00.000-04:00

In 2008 I was blessed with the opportunity to teach a class for students with multiple and severe disabilities in grades Kindergarten through second grade. Unfortunately I had to leave this teaching position at the end of October as my own disability progressed and I became seriously ill. However, in the two months that I taught this amazing class of children, I witnessed disablism in a public school that I had hoped was a thing of the past. At the beginning of the school year, the principal made it clear to me that it was a school tradition that I was to continue for each and every class and each and every grade level to visit my classroom to "see" my kids and ask whatever questions they might have- in front of my children! My children were to be used as a combination object lesson and in school field trip exhibit. I refused on the grounds that my children had the same dignity and respect as the other children in the building and were not attending school to be put on display. Also, my children may have significant disabilities but they have the capacity to understand when people are staring at them, when people are asking questions about them, and when people are talking about them and they deserve the right to not under go this experience. Every child is entitled to be treated as a child first and foremost. My students were more than cute little school mascots to be patted on the head in the hallways (I put a stop to that practice immediately as they were literally patting my children on the head!). We were a part of the school and a part of each grade we attended for class.
Inclusion was not about a general education teacher being so kind as to let us visit their classroom daily, it was about being educated alongside peers who are typically developing and being one of the class. You are not "doing me a favor" by allowing my student to be included in your classroom. Talk to my student, ask them questions, engage them, give them access to materials. Let me know prior to that day what you will be doing so I can adapt the lesson and have accessible materials for my student so they can learn along with their peers. Your attitude as the general education teacher will impact the attitudes of all of your students towards my students. You set a huge example. My students do not want tolerance, they want acceptance and appreciation of both their differences and their countless similarities to the other students.
On field day, I took my class out during the Kindergarten through second grade time and we participated in every single activity that I could modify or adapt. We were there to play alongside and with our peers. This shocked parent volunteers who felt that surely it was too dangerous for us to be running races with our children who use wheelchairs - although I am pretty sure that their boisterous laughter proved otherwise- and to be allowing our children to play T ball. Heck, this shocked teachers and administrators who informed me that in the past my class had always just come outside and watched the activities of field day but never participated. Just because my children used wheelchairs or had developmental disabilities did not mean that they did not thoroughly enjoy throwing a basketball at the hoop, tossing a football into the endzone, setting off air rockets, running races, playing with the giant parachute, or running our own version of the sack race as pictured above. We were not there to be school mascots, we were not there to watch, we were there to be included and I made sure that my children were not left out even as other teachers and administrators were left speechless.
My students attended school for the same reason every other student attended that school: to learn, to grow socially, and to be appreciated as an individual. Tradition may have put us on the outside looking in, in the backrow of every assembly where we could not see and could not hear but also could not be seen, and on the sidelines. Tradition may have viewed inclusion as a favor, as a time when my students went and sat in another classroom but were never a part of the action. Tradition may have encouraged the head patting school mascot view of my students. It was and is time that traditions change. My students are just as worthy of respect and dignity, as eager to learn, as social, as communicative, and as valuable as every other student. Every child is first a child, and should be treated as such. The labels used to categorize and separate children need to be left at the school door and education should focus on teaching all children to meet their needs and building a community where all are not tolerated but appreciated.

A True Crayola Wonder

2010-04-30T13:45:00.000-04:00

I find myself remembering a specific little girl that I had the honor of teaching as a practicum student in college, a little girl who at the age of three taught me lessons that I am still learning in my own life at the age of twenty eight. Josie was one of a kind, a brilliant just turned three year old with a twin brother who had significant disabilities. Josie was paralyzed from the mid chest down due to a spinal cord stroke as a premature infant, which impacted her diaphragm and thus her ability to speak loudly and clearly, but in all other ways of development she was above and beyond expectations. She was so patient with her brother, and she was his protector making sure that he was never overlooked at circle time or during activities in the classroom.
One day during free play in the classroom, otherwise known as barely controlled chaos, I observed that Josie was over at the fine motor/art center and she was methodically wheeling herself back and forth from the shelf to the table. What I saw amazed me. She had apparently been unable to obtain anyone's attention over the din of her peers shouts and laughter and yelling, so she decided to get the materials she needed by herself to draw. The paper had posed no difficulty, but the basket of crayons was too large and awkward for her to place on her lap and wheel over to the table. So instead she was putting one single crayon on her lap, wheeling over to the table, placing it beside her stack of paper, and then wheeling back for another color. I watched in amazement at her determination. She was not frustrated, she was not angry that it was taking her so long to do what another child could have done in a single grasp, she was not bitter. She was focused and proud of her ability to achieve her goal even if it took her more than a dozen trips to retrieve all of the colors she wanted. I had to sit on my hands to prevent myself from jumping in to "rescue" her. When she finally had every color she wanted and had secured herself before the table to begin coloring a smile brighter than any I had ever seen lit up her face as she surveyed what she had accomplished. She had done it - it may have taken a little longer, it may have been done a little differently, but she had done it! As she started to color, I slid into a chair next to her and we had the cutest little conversation.
Me: Josie, that is a beautiful picture! Can I color with you?
Josie: Sure! But you have to get your own crayons!!
Josie, thank you for teaching me how to get my own crayons, and how to be so proud of every success, and how to never give up when it seems like you can never move the mountain (or crayon basket). I was your student far more than you were mine!!

Shooting Beauty

2010-04-25T19:30:00.000-04:00

Quite a while ago I won a copy of the documentary DVD Shooting Beauty from To The Max. I finally was in a good movie watching mood this afternoon and so I nestled into the couch and popped the DVD into my laptop. Yes, I have a regular DVD player that is making a nice dust collector beneath my TV because I have no idea how to connect it to the TV via the digital cable box and if I have learned one lesson it is to not play with expensive electronic devices. Anyway, my laptop serves as a perfectly respectable movie player. I was very excited about the prospects of the film. The plot was fascinating to me. It is about a fashion photographer who begins to take photographs of individuals with disabilities but then realizes that she needs to create a way for them to take photographs of their daily lives from their own perspective. The art they create together is beautiful. Even more beautiful is the demonstration and recognition that each person, regardless of their disabilities, has a voice and a point of view and a life to share. As stories are told, it becomes apparent to the watcher just how much more alike than different even those with the most significant disabilities are to the abled. This documentary is real, it is unbiased, it is honest, it is revealing, and it provides a new perspective and a new point of view. There is just as much beauty in the photographers as in their photographs. To learn more about this project go to Everyone Deserves a Shot.

Childhood Expressions Blog Carnival

2010-04-25T13:24:00.000-04:00

TherExtras Childhood Expressions Blog Carnival

The amazing Barbara, OT and PT extraordinaire, is hosting a Blog Carnival regarding Childhood Expressions. It is well worth your time to check it out! The adorable teddy bear above will take you to the fun, as will the link below. My post Trilingual Nonverbal Communication is one of the entries in the Carnival!

Running on E

2010-04-24T21:58:00.000-04:00

I remember at one point not all that long ago having this mysterious substance called energy. I think I got a hole in my fuel tank because energy is a very rare commodity. Today my BIG, HUGE accomplishment was getting dressed and going to the store Right Next To my apartment building. It is so close I can see the back of the store from my window. I managed to roll there, with a stop to rest once I got inside the store, and get basics to stock my cupboards and fridge for the next few days. Coming home was easier because the rear driveway of the store is a HUGE slant, and the very best part of the exhausting trip. I perch at the top of what is basically a launching ramp and check carefully for traffic on the side street at the bottom. Thankfully this is small town Michigan, so traffic is rare and I can spot any vehicles easily. Then I eek my chair out over the edge of the driveway and throw my arms up in the air. At the bottom of the downward trajectory is a double bump of curb and pothole that adds some serious air time. I usually come to a stop somewhere in the middle of the road, although I have made it completely across the road before. This feat scares the dust out of the mainly elderly population that happens to witness it. So, anyway, by the time I arrived home I had used all of today's supply of energy and more than likely a good share of tomorrow's. There are many dishes in the sink waiting to be washed, and the floors need to be vacuumed and mopped (hint, that takes many days to accomplish and I may be seeking assistance with that as it eats up about a week of energy), and I am too tired to do anything about it. Not sleepy tired - although I did crash with some weird system errors earlier (I was violently shivering, freezing cold, every muscle hurt, and I was groggy) and took a nap then- but physically exhausted to the point that I can feel the weight of my eyelashes tired.
Here is a good example of tired. My blood sugar crashed this evening, and I was in the kitchen fumbling to mix up a protein powder that I keep for when I don't feel good enough to eat. I was having trouble opening the new milk jug, so I placed the half gallon container between my knees (now would be a good time to point out that my knees rotate inward with spasticity) to hold it and then firmly twisted the lid. Apparently my knees were applying significant force to the jug because I created a milk fountain. After a few choice and creative curse words, I looked at the large puddle on the floor and looked at my pajama pants which were already wet. I then stripped off my pajama pants and tossed them on top of the milk puddle and let them soak up the mess. I was too tired to go get a towel, or to dig under the sink for a roll of paper towels. I was then too tired and shaky to go get new pajamas, so I wore nothing but a t-shirt until the next time I went into my bedroom for medicine and then I snagged a dry pair of pants. The shakiness is gone thanks to the milk protein drink, and my soaked pajama pants are spending the night in the bathtub until laundry day tomorrow when I will pay a little extra to the wonderful woman who does my laundry for having to deal with stale milk smelling pajamas.
My BIG goal for tomorrow? I am running out of dishes, so I think I need to wash at least a few of those so I have some plates and bowls to eat from.

A New Attitude

2010-04-22T22:28:00.000-04:00

I am sleepy as I write this, so the odds of it making any sense at all are at best 50/50. :) Make your wagers now! This photograph is of the image on my new favorite T shirt from Zazzle. I may rely upon a wheelchair for mobility, but I still have attitude. For a while now I have been feeling like my life is stuck in this sick and twisted version of the movie Groundhog Day where each day is a repetition of the day before and there is no escape. I thrive on having to think, to problem solve, to be creative, to engage and interact, to create new ways that have never been tried before, to celebrate successes that to the outside world seem insignificant but to the world in which my heart dwells are achievements akin to climbing Mt. Everest backwards while blindfolded. For too many months my life has been on hold. I have been in a stagnant holding position, a medical limbo, a place of existing but not living my life to the fullest. That is not me. I need to live my life and live it out loud, to live it to the limits, to live with passion and pursuing the gifts I have been given and the marvel of truly being alive. I can either wait in this holding position to die, be that at age 35 or 75, and just wander through the intermittent time, or I can take control back in my life and live every single moment that I have no matter what life throws at me. I will rebel against this disorder that continually whispers "you can't" "you lost", "that is impossible" and throw in its face all that I can do, all that is not lost, all that is possible. I will chase my dreams, even if those dreams have been changed slightly, and I will not remain stagnant any longer. It will take time to get a plan of action in motion, but I am beginning the process. I am breaking free of the hold that this has had on my life and declaring that I will live my life boldly, unabashedly, in faith and mercy, and refusing to sacrifice a moment. I must create something powerful, something beautiful, something of change and impact from this situation. I must choose to live instead of just being alive. In the future I see myself returning to college to pursue a Master's Degree, regaining my independence so I no longer feel trapped by relying on others for my access to the world, and reclaiming the passions in my life. I, and only I, will define who I am and what I am capable of, and my life will be limited only by my ability to imagine and to believe and to create adaptations as needed.
If this sounds dramatic, I apologize but this past week has been rough emotionally. This was a break through to realize that life will not be like this forever and that I can change so much of my reality. This life is mine to life, or mine to surrender. I am a rebel with a cause again!
P.S. Please let me know if this does not make any sense and I will rewrite it when I am more awake. I am very groggy and sleepy but wanted to write this tonight.

Trilingual Nonverbal Communication

2010-04-21T14:26:00.001-04:00

Talk

Katerina was about 25 pounds of pure stubborn will. She had never been away from her parents for any period of time prior to entering my preschool class, and she was definitely less than enthusiastic about finding herself in the midst of controlled chaos for 3 hours each day. Once it became evident that this school thing was not going to end in the near future, Katerina decided to communicate her discontent loudly and clearly. Or should I say silently and clearly. Katerina spoke both Polish and English, and had a solid 50+ word vocabulary in each language. On my home visits she chattered like a song bird, switching between languages and putting on a show of singing and dancing. At school she became silent, refusing to make a single sound. She also knew basic sign language, and thus began our stalemate. I would request that she use her voice to make a request or communicate, and she would easily communicate her desires or preferences in sign language. When she thought no adults were listening, she would chat happily with her peers or even read from memory the Brown Bear, Brown Bear book to an audience of dolls. Yet the minute an adult approached she reverted to the silent treatment. Finally one day about three months into this stalemate I decided to up the ante to get her to talk, a skill I knew very well she possessed. I made the ultimate treat in our preschool classroom - popcorn. Then I offered it to the children, and the following exchange occurred with Katerina. All text in Red is Sign Language.

Me: Katerina, do you want some popcorn?

Katerina: Want Popcorn Please.

Me: Katerina, that was good signing but I need you to use your voice and tell me if you want popcorn.
Katerina: No voice. Want Popcorn.
Me: No voice, no popcorn Katerina. You can use your voice.

Katerina: No voice, Yes Popcorn. Want Popcorn!

Me: No voice, no popcorn. Look at all your friends eating popcorn!

Katerina: NO voice, Want Popcorn NOW! Please.

Me: You know that you need to use your voice to get popcorn.

Katerina: Fine. No want popcorn. No voice. All Done!

Katerina then proceeded to get up from the table, clear her spot, put her lunchbox back in her cubby, and go over to the book corner to read. My negotiations had failed. She had communicated to me that her will to prove her dislike of school by controlling one of the few things she could control in her life - when and where she chose to speak- was greater than my power of persuasion. She had communicated to me that she was fully aware of the situation and was making a conscious choice not to talk at school. She communicated to me that this was about having some power and some control and something to be in charge of when her world had suddenly changed and there were few things left during the school day that she felt she could control. Her parents might be able to put her on the school bus, we might be able to coax her through the daily routine, but we could not make her talk. We were held hostage by a 3 year old, and she knew it and wanted it that way. During the school year she exceeded every goal except her speech goal- she met that one at home but not at school.

*Image from ASL University

TherExtras Childhood Expressions Blog Carnival

New Shoes

2010-04-20T19:26:00.003-04:00

About four weeks ago I ordered custom Converse All Star sneakers online and this week they arrived in the mail. You choose every detail of the shoes, from the color and fabric design of each section to the color thread used to stitch the shoes together to a custom message that can be embroidered on the shoes. Since Converse are the only shoes that fit comfortably over my AFOs, especially since I now have 4 straps per AFO to try and hold my foot inside of the brace in an approximation of a normal position, I wanted a pair that were unique. I predict splurging again in the future for a "fall/winter" style. :) Yes, those are pink skulls on the tongue of the shoes and also on the inside fabric. Girlie yet punk. Purple is my favorite color, so I went with a majority of the shoe being a nice shade of purple with pink stitching to match the pink skulls and pink laces. Then I had to choose what I wanted embroidered. I considered many, many things. I finally settled on Believe, as shown below, because throughout this journey I have had to simply believe - believe that an answer would be found, believe that tomorrow would be a better day, believe that God has a plan. I choose to Believe.

These are now my favorite shoes, and I can not wait to start wearing them and showing them off!!

Mama Said There'd Be Days Like This

2010-04-17T20:50:00.000-04:00

There are bad days, and then there are bad dysautonomia days. Today is a bad dysautonomia day. I have spent the entire day curled up on the couch and unable to maintain an upright sitting position for more than 5 minutes. Toasting waffles for dinner was a race with my blood pressure to see if the waffles would be toasted before my blood pressure hit the floor (and took me with it). Waffles won, but not by much. I have fought to stay hydrated, which is rather difficult when you never feel thirsty and even more difficult when your intestines decide that they need to rebel and stage a mass evacuation drill and even more difficult when your stomach decides to try to work in reverse, causing severe nausea. I have been alternately a good degree or so below normal body temperature, huddling under my favorite blanket, and a good two degrees above normal, my skin feeling on fire and burning to the touch of anything. My heart decided to join in on the fun and created some funky new rhythms as it also alternated between not quite too slow and not quite too fast. Yet with all of that going on, I still laughed today. I still shared jokes, I still celebrated friendship, I still wrote, I still listened to an audiobook, I still watched favorite tv shows, I still planned and schemed and dreamed. I still lived and laughed and loved. Even on a bad day, on a day when I wanted to cry but honestly could not find the energy to do so, I lived each moment as much as I could. That is a priceless lesson I have learned from this Mitochondrial Disease- even the bad days need to be lived to the fullest. And just for the record, I still hate Pollyanna.

This Weekend

2010-04-09T18:28:00.000-04:00

This weekend is going to be FULL

Of crafty fun and goodness

This is my brain NOT on Drugs

2010-04-09T13:30:00.000-04:00

Courtesy of Dysautonomia and the working diagnosis of Mitochondrial Disease, I have no functioning sleep wake cycle. Circadian rhythm is a joke. My poor brain is very discombobulated and without chemical assistance is never able to fully awaken and is never able to fully fall asleep. It is like an endless night of the living dead. I take my "lets convince the brain to wake up medicine" as soon as I get up in the morning, but there is about a one hour lag between when I take them and when they convince my brain to wake up. That one hour has led to some great family stories of the hysterical things I have reportedly said and done, and more than a few unexplained bruises. This morning was a great example of my brain NOT on drugs.
I made myself a cup of coffee, which I can do in my sleep thanks to a coffee maker upgrade back last fall. You pour boiling water across your lap once because of a combination of not being awake and poor arm strength and you quickly problem solve. I love Klaus my Keurig coffee maker. So I took my heat resistant, silicone lidded cup of coffee with me into the bathroom where I get dressed (I know, some may say eww but I was not using the toilet or flushing it so hush). I set my coffee down in the bathroom and then went to gather up my clothes. I then tossed my clothes into the bathroom (my wheelchair does not fit - by a freaking inch- so I transfer to a walker) and went to turn the light on. I stared at the two switches. I tried one, but that only made the room darker so that was no good. I put that back where I found it. I tried the other one, but that just made an annoyingly loud noise, so I put that back where I found it. OK, come on I know one of these had to be the light switch! TWO minutes later I realized the lights were already on!! Nice. As I was getting dressed I discovered that when I got dressed yesterday morning after my bath I had not only put my underwear on backwards but inside out - and had not noticed it for 24 hours. Bonus. I managed to get dressed with everything in the correct position, sipping coffee along the way. Teeth brushed, hair pulled back into sloppy ponytail, I finally looked in the mirror. I decided I needed to apply Cetaphil. I took the lid off of the jar and stuck my finger inside only to discover I had just stuck my finger in my coffee. Coffee as a facial was not going to do it for me. I tried that again with the correct lotion which worked so much better. Then I came out into the living room to put on my AFOs and shoes. Putting my AFOs on is a wrestling match (if you want to know why look at the post two entries ago with photos of the spasticity and dystonia in my feet), so at first it did not occur to me that I was having an unusually hard time getting my brace on. Five minutes later it occurred to me that it was the wrong brace. Odd thing is that the curve of the wrong brace was a more comfortable fit to my foot in many ways - it let me keep them curled.
This is why I have a rule with anyone who might come in contact with me during that hour lag period that nothing I say or do can be used against me. I am not to be held accountable to anything you might convince me to agree to doing and anything I say that makes no sense can not be used to humiliate me. The same thing applies to the lag period between when I take my "convince the brain to go to sleep medicine" and actually fall asleep!!

2010-04-08T01:52:00.000-04:00

2010-04-06T20:56:00.000-04:00