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.

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!

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.

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!

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

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.

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.