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 :)

It is interesting how one event, large or small, can divide a lifetime into “before” and “after”. In my case, there was my life “before” this specific unidentified illness turned everything upside down, inside out and backwards and my life now, “after”. Of course there is a good amount of overlap between the two, as I am the same person, but it is the things that are different that are most intriguing sometimes. These differences can be annoying or frustrating, as in the limitations on previously beloved hiking, but they can also be wonderful discoveries. "Before" I very hesitantly and only at the strong encouraging of my friend experimented with art in the form of attending a few stamping parties and making some collage type ATCs (which I never ever showed to anyone else). "After" I have discovered that while I am never going to be a professional, or even a great artist, I can escape to a place where I forget about "before" and can experiment in so many different ways with my perspective of the world through visual arts. I am no longer fearful of failure, of being less than perfect, of making mistakes or not doing things right. I am certain I break more rules of the art world than I can count, but I don't really care. For me it is one of the few things that belongs completely to the "after", one of the few times I can absolutely forget "before", something wonderful and new and unexpected that has emerged. And oddly enough, with those fears gone, I am far better than I ever was before (still not good or great) but I delight in it and that is all that matters to me. Where I expected only loss I found great gain. At my expectation, once again, God laughs.

Did you know that the concepts of tired and exhausted actually have multiple levels and degrees to them? That there is a complex and complicated system of quantifying these ideas for which the English vocabulary is seriously lacking? Well today, free of charge, I will offer the Cliffs Notes edition on degrees of exhaustion, or layers of tired (depending on if you want a pop culture reference, or a classic literature Dante reference).

1) Tired- you could continue what ever activity you are engaged in for a while longer, but it would be more comfortable to sit down and rest; with proper motivation you can find the energy to get up and going again

2) Drained- you are mentally tired as well as physically tired and are uncomfortable unless sitting or reclining

3) Sleepy- you are nearing the point of needing to sleep, and activities are becoming difficult

4) Groggy- it is time to sleep, your ability to focus and concentrate is gone and you are comical to observers as you are "sleepy drunk"; this is a great time for those not groggy to engage you in a conversation and laugh hysterically at your answers

5) Exhausted- you may or may not be sleepy/groggy but it is a physical effort to move your body; you debate whether or not you really need to go to the bathroom that badly because of the amount of energy required to get there and back; you ignore itches because scratching them is an effort

6) Beyond exhausted- sitting up requires vast amounts of energy which you do not have, and you discover that odd body parts like fingers and eyelashes suddenly weigh a lot; Activities that involve movement are a joke and you long to be just tired. You watch enough TV and DVDs to reach a point of detesting most programs, and you actually wear out an iPod from overuse listening to music and audiobooks. Sleep does not change this state, you fall asleep beyond exhausted and wake up the same way - sort of like a really warped version of ground hog day. And there is not enough Starbucks in the world to create the necessary energy.

My energy levels fluctuate between days last month when I wheeled myself 1 1/2 miles home from the store to more recently when I have been bouncing between exhausted and beyond exhausted. I keep telling God that I have too many things to do to be tired, and He keeps laughing and reminding me that this whole thing is out of my hands. Sometimes it is a little annoying, the whole "God is always right" thing! It makes debating and arguing in prayer a bit one sided and predictable. Not that it stops me or anything though! :) Today is totally my fault because yesterday I pushed myself far beyond the limitations of my body in order to prove a point to myself in cooking dinner. The cost benefit analysis at the time said it was worth it, and I still agree. Besides, I am too damn stubborn to play by the rules of this body. I am still the one in charge here, regardless of the coup it is trying to throw on the government. But for today I am curled up on my bed watching DVDs and pretending that it is because I am that into them instead of being at level 6. :) Denial is more than a river in Egypt!

Recently I have purchased several TV series seasons on DVD because 1) there is never anything decent on TV when I have a "turn" to change it from HGTV (my mother is addicted - is there HGTV addicts anonymous? A 12 step program? Detox? Anything???) and 2) the couch is about as comfortable as a park bench, so with DVDs I can curl up in bed and watch them. My choices, however, seem to show that I am a freak obsessed with things forbidden to most Christians...that I am being lured to the "dark side" where Darth Vader awaits me. My DVD movies I bought include a two disc special edition of The Nightmare before Christmas, which I immediately snatched up because last year my incredible friend and I spent weeks trying to find a copy of it so she could educate me on the magic of Tim Burton, The Boy in the Striped Pajamas, which I know is heartbreaking but is a story that is powerful and needs to be told to new generations, and I still love my copy of RENT live on Broadway. MY TV on DVD selections are TrueBlood, which I am savoring and eagerly awaiting season 2, Ghost Hunters Season 4 Part 2, Paranormal State Season 1, Emergency Season Two (old, old show about paramedics that I used to watch in reruns with my mom and that is hysterical from the current technology), and Pushing Up Daisies. Somewhere I also have the final season of Gilmore Girls on DVD that I bought over a year ago. I have always admitted to having a wicked dark sense of humor and A willingness to view the world from different perspectives and avoid judgment. Besides, another four hours of watching people debate over which shade of white (off white, antique white, true white, dusty white) paint to use or how many throw pillows is too many is far more dangerous to my psyche than some hot vampires and ghost busting!! My weekend plans - vampires, ghosts, dead people brought back to life, old TV shows, sketching, working on an impossible puzzle, reading one of the 10 books I now have scattered around the house, writing a few letters I really need to write, and enjoying the relief I seem to be getting from the newest medicine cocktail. Whoever said diamonds were a girls best friend obviously never dealt with muscles in revolt, because screw diamonds Valium, Klonopin, and pain meds are my best friends right now. I went an entire day without one of the "jerking my knee violently up and smashing it into my face" spasms yesterday, and just when my legs started to really hurt and contract again, I had just taken the Klonopin and pain med. Maybe, just maybe we have a system of meds that will offer some relief?!?! I was wondering how I could explain the inevitable bruises from my knee slamming into my face, or my joints swelling from dislocating from the severe contractions. Is it domestic violence if your body beats you up?
I realize that this journal has contained a lot about my medical situation right now, and that is not the defining feature of who I am as a person. However, at this point in my life it is a huge obstacle that I am having to adjust to and deal with on a daily basis. Keeping a record not only helps me share information with friends and family, and express my emotions, but it also helps me keep straight all of the different things going on. I am still very much my quick witted, sarcastic, take life as it comes, independent to a fault, love to laugh, passionate, dedicated, dreaming, always learning Bethany that I have always been. The obstacles in my way have just changed temporarily. Instead of being up to my elbows in diapers and laughing as my students proved to me over and over that I was truly the student and they the teacher, I am up to my elbows in a medical quagmire and I am laughing as God is proving to me over and over that I am not in control and never have been. I am not a fan of that lesson, and we debate this often - but I lose, and he laughs at my silly willfulness. Hey, He designed me this way, attitude and all. I even occasionally debate with him the concepts of justice and fairness. He lets me yell all I want before gently reminding me that earthly justice is not the same as heavenly justice, and that life comes with no money back guarantees or warranty. That in a broken world, no one is spared. And he laughs gently when I admit that I know this but it still just sucks.
This post probably makes little sense, as it is just unedited free writing as I am curled up on my bed with a dish of frozen cherries (one of my favorite treats on earth!) and an assortment of my DVDs and books. It is real, it is straight from the heart, and it is my life. And it is well, it is well with my soul.