Bad Santa

Christmas is one of my favorite holidays because I love to watch it through the eyes of children. I hate shopping, I refuse to go near a store on any Friday near Thanskgiving, and I really am not a fan of the mass commercialization of the holiday. What I love is watching a child wiggle with excitement as you make ornaments for a tree, or as you count the number of days until Christmas, or as you decorate a gingerbread house. I am fascinated to watch and listen as children discover the sights, tastes, smells, textures, and sounds that seem to exist only during Christmas. The magic that remains alive in children is the reason I love Christmas, with all of its trappings and foibles. The innocence, the wonder, the magic, the excitement, the purity of it from little eyes. So when I read that there is a growing pressure for Santa Claus to lose weight I didn't know whether to laugh or shout in frustration. Um, have we as adults lost our minds here? We are now policing the weight of a mytical being? What's next, the Teletubbies on a diet? After all, they are rather round and pudgy...and they carry televisions with them in their stomachs! I figure if Santa can still manage to fit down every chimney without getting stuck we can leave him alone. When he gets stuck, then we have an issue. But what really made me mad was the fact that we can not possibly have any "role models" for children who are anything other than incredibly skinny. Has anyone looked at society lately? More than 50% of the population is considered overweight. Statistically, that makes it normal to be pudgy, chubby, whaterve adjective you prefer. So lay off of Santa. Let him have his milk and cookies in peace. And for that matter, if him saying "Ho, Ho, Ho" offends you, you are most likely on the naughty list anyway because thou protesteth too much. Just because the world can be a cold-hard-truth place, don't ruin the magic of Christmas for those who truly celebrate it with wonder and innocence. And really, don't they have anything better to worry about? It's not like there is a war anywhere, or poverty, or anything serious happening in the world.

The Freak in the Mirror

Sometimes the entire world can see something before you ever open your eyes and see it yourself. Sometimes even with your eyes open you are absolutely blind. I am able to convince the world that I am no different from them, I am able to blend in unnoticed, and I am treated no differently by my friends who know about my undercover life as a medical superhero than by those who only see my alter-ego. Yet when I look in the mirror all I see is a freak. I can not look past what I perceive to be huge imperfections to see the beautiful person that everyone else keeps telling me that I am, the person that I have become. Instead I see the freak that doesn't belong anywhere and that is different in all ways bad and no ways good. Self esteem issues....no, not much. But that freak in the mirror - she is no more the definition of me than an old photograph. It is an illusion, one that I have bought into for far too long. I may never see myself the way that those around me see me, but now when I see the freak in the mirror I am learning to just laugh at her instead of believe the things she tells me.

Lemons

You're Invited To: A Pathetic Pity Party
When: Now
Where: Here
RSVP Not Required
Comments kicking me in the butt are more than welcome

I am by no means Pollyanna and I am quite thankful for that because really, when I watched that movie even as a child I wanted nothing more than to find a well to push her into over and over again until she muttered a bad word. No one can possibly be so freakin' happy and cheerful about every single thing in their life all the time and be sane. Or at least survive long without someone finding the above mentioned well and dunking them. But I don't think I fall on the opposite end of the spectrum either where I let every issue and difference be a giant weight that I carry around with me and announce to the world as the town crier, bemoaning the injustices of life. I am somewhere in the middle, most of the time able to just take up whatever has been given to me and go forth into life annoyingly thankful to have been given another day that defies all statistics. However, there are days like today where I become overwhelmingly frustrated with the little things. Rarely is it the big things that cause me to hang up the decorations for an all out pity party (those mental decorations by the way are some black crepe paper, some wilted flowers, and chipped china place settings that don't match). Instead is is the little things that add up and cause an overwhelming sense of frustration. I can deal with the fact that I have a malfunction in my immune system that causes my blood to clot improperly and thus led to my oh-so-fun blood clots in my arm and stroke experience. What is driving me nuts is the inability of any doctor to get the level of my rat poison - err coumadin correct and the weekly scheduling negoation required to get my blood drawn. Unfortunately since I work full time I can not come in at 11:45 am or 1:10pm to get my blood drawn, instead it needs to be at the end of the work day when I can scoot in after home visits or slide out just before the busses show up. How many other 26 year olds have a steady date with the phlebotomist and no dates with guys? I can handle the fact that it takes a small village of chemists to keep me alive, and I don't mind too much swallowing more pills than an gereatric wing of a hospital each day. The issue is watching my hard earned money be eaten up to buy those chemical concoctions and to find out that even tough my insurance has a cap on out of pocket expenses, medication copays do not count. So even though I have way surpassed that cap with copays it is meaningless because they don't count towards that limit. To the CEO of the insurance company I would like to extend an invitation to spend a month in my shoes, in the shoes of any individual with chronic serious illnesses who are working incredibly hard and barely making it because you refuse to cover necessary services or place such high copays on items that we can not afford to get the care we need. I have insurance, and without it I would be screwed, but with it I am just making it. Frustrated. And then there is the mourning of things lost to these dratted illnesses. I hate losing at anything - board games, bets, competitions of any shape and size. I detest losing to these malfunctions of my body and having to surrender even an inch. So having to let go of things that I once loved is a very sore point and a huge frustration. Music is my escape, my haven, my strength and my joy in so many ways. There is one country band - Sugarland- that is my absolute favorite music ever. I have worn out CDs listening to their music. Theirs is the only CD I have in my car and I can sing ever word to every song on their two CDs. They will be in concert about 1 hours from my house next month and I can not go. Money is not the issue (well money is always an issue but it would be pair for if I could go). The issue is that the dysautonomia has stoled this from me. I can not go to concerts, to the theater to see musicals, or to any setting that is likely to be loud, crowded, have lights that flash on and off, that may be off from standard temperature (colder or warmer than normal), or that uses bright lights in a dark setting. I will "crash" - my blood pressure will drop, I will experience what can only be described as a migraine to the third power, I will become incredibly dizzy and light-headed, I will become indescribably nauseaous, I will often have difficulty with vision and balance and the ability to coordinate my own movement, and I will experience changes in my heart rate and rhythm. Fun! Movies viewed in movie theaters are starting to have the same effect and I predict that soon they too will be surrendered. Family gatherings where there is a lot of noise, it is crowded, there is louder music playing, it is warm, people are constantly moving around, there are bright lights, and it is stressful (families are stressful) also cause the same reactions. I am oh so popular with my family for this. I no longer attend most family events, and not just because for years I was the family failure. I have never been inside of a bar or club of any sort because the loud music, lights, crowded atmosphere seems like a recipe for disaster. Even if I were willing to brave the crash, there is the issue of the narcolepsy. My medication allows me to experience life somewhere in the realm of normal living-and-breathing humanity but it has a time limit. Usually by about 8:00pm I am starting to wear down. Yes, my social life is nearly invisible because I have the same sleep schedule as my three year olds. I can push and stay awake later but then I pay for it. Repeat the crash scene above, either after pushing it for a while or in a milder form the entire next day. So I have surrendered my ability to enjoy concerts and movies, family gatherings, my social life, money, and endless time to these malfunctions that I have no control over and that pisses me off. I hate losing. I hate giving in. I hate surrendering. I hate being different. Well, if that isn't something straight out of my middle school journal! Wow, I sure have come a long way in 13 years (rolling eyes). Okay, so now that I have ranted, raved and had a pity party (anyone want another cup of lemon juice? Sorry I didn't make it into lemonade this time.) it is time to kick myself in the pants and snap out of it. I have ten little ones that are expecting a teacher with a wide open heart and excitement about life tomorrow, and I can not give them anything less. I thank God for them, because they truly are my joy and my grace. And I promise that the next time the lemons won't be so bitter - I may suck at making lemonade but perhaps I will make lemon poppy seed muffins or something else. Lemonade is so overrated anyway.

* It is very hard to remain frustrated and upset when your iTunes player randomly starts playing Put Your Finger In The Air (folk music style) because you forgot to separate the music for the Circle Time CD from your own music. And to follow it? Little Bunny Foo Foo. :)

Choices

I have never cared much for politics, which is ironic since I find myself far too close to the nation's capitol for my own comfort. While I fully understand and appreciate the incredible blessings of living in a country that is a democracy, the intricate workings of said government are as interesting to me as watching cogs spin endlessly on an antiquated piece of machinery in a museum. Perhaps it has to do with the fact that I have never been good at lying, and that my negotiating skills leave a lot to be desired (I am a horrid bluff and tend to throw all my cards on the table much to soon)and politics is lying, bluffing, negotiating, and fakery. However, having to face the grown up world without the cushion of mommy and daddy to catch me and without the relative innocence of self-imposed invincibility has knocked some politics into my cobwebbed head. One area is education, which is a debate that I will jump into another day when I have my boots on and see a nice mud puddle. Another is health care. I am used to being poor, with various levels of poor fluctuating as I grew up. I am used to working incredibly hard to succeed and to give everything I have to the things I hold dear. I am not used to having to choose between medication and groceries. I am not used to having to choose which of my medications to take for the next two weeks because I can not afford to pay for all of them. I am not used to deciding my medical care based not on my health and the incredible balancing act it takes to keep me alive and functioning, but based on access to the things that I need most. This is not an issue of having medical insurance because I have insurance from a "good company" and I work a full time, respectable job. It is an issue of what it means to have chronic, life threatening illnesses in a time and place where the cost of living is high and medical care higher. I prioritize my medications when I refill them - critical for life, critical for functioning, required, and not causing immediate danger if skipped. For example my heart medication is critical for life because if I slip into v-tach and fail to reconvert then there is no need to worry about paying for anything else. My thyroid medication is not immediately dangerous because, while life sucks when you are in a hypothyroid state, it is unlikely to kill me within a few weeks. My blood thinners are critical for life - I really do not want to repeat the stroke event - but I am creative with how I add up pills and portions of pills to get to the necessary dose. My medication for insulin resistance and polycystic ovarian syndrome is not critical for life because I have always had normal blood sugars and the symptoms of the POS are annoying but not fatal. I choose which doctors I see based on who can cover the most symptoms and what seems to be the area with the mst malfunctions. I am seriously overdue for cardiology and neurology, and if I confessed to my rheumatologist how long it has been since my last eye exam he would probably withhold my medication until I completed the exam or otherwise make the exam required. Yet I can only afford so many appointments each month and I have to be cost effective. These are the choices that I should not have to make living in America, working full time, with insurance. These are the choices that no one should ever have to make. I had better health coverage when I was on medicaid - why should I feel like I am gambling my health because I choose to work incredibly hard, to sacrifice so much in order to give instead of just take, to follow my dream instead of continuing to allow others to be responsible for me? I may not have the most eloquent words to express the desperation, but when did medical care become a privilege instead of a basic right of humanity? When did the worth of my life, as measured by the care given to sustain it, become equal to the worth of my checking account?

My Hands Are Overflowing

There are some times when your instincts kick in that you are very thankful - swerving to avoid an object in the road, ducking as a ball comes flying at your head. Then there are times when you act on instinct and then regret your actions. There is a short background necessary to this story to fully appreciate it. Apparently God has a wicked sense of humor. My greatest phobia in all of creation is vomiting. I would literally go to a hotel when my mother got the stomach flu. So God, in his infinite wisdom and with his sense of humor, has blessed me with beautiful children in my class who are proficient at what? Any guesses? Yep, vomiting. Last year it was such a common occurrence we had blue buckets stationed around the classroom to catch it. Nice. In summer school a child vomited on my feet. Thanks. So tonight I am babysitting for my blue eyed boy, who has done his share of vomiting at school. He has to keep up with his peers you know. He was complaining a bit this evening as we watched his choice of movies and so I was letting him sit on my lap. Any guesses what beautiful boy did? It is obvious. What is not obvious (or might be by the title of this post) is how I reacted. In an act of pure instinct, and in direct imitation of something that two days ago I swore I would never do, I stuck my hands under his mouth and caught it. Um, nasty does not even begin to cover it. He seemed satisfied with himself and I had a nice handful of his dinner. I deposited it on his sheet on the floor and positioned him so that any more returns would land on his sheet and not on me. After making sure that he was done with his review of dinner I cleaned him up (easy, I wiped his mouth), folded the sheet, and ran to wash my hands. I think after that I have earned some kind of bravery medal. Who would ever expect such cute creatures to be so disgusting? :) And who knew I could catch so well with my bare hands?

You Want Me To Put My Mouth Where?

There is nothing more fun to do on a Saturday morning than to kneel on a nasty gym mat in a high school at 8 am and perform CPR on an alien-looking dummy to the sounds of mild grunting from your classmated as they too pound the crap out of this half-bodied form. Well, perhaps sleeping would be more enjoyable. Or grocery shopping with a hyperactie toddler. But my certification had expired and I do need to have these skills, so I pulled my sorry self out of bed on a beautiful Saturday morning and sat in a high school classroom that brough back creepy half-memories (my high school was more modern, and just looked a little less dingy somehow). So my dummy had the nerve to lose his arms, legs, and mot of his torso but still want CPR performed on him. I had no problem crushing his chest with enough force to snap ribs, but staring at his alien silver face with odd orb eyes and a gaping hole of a mouth I knew that there was not a chance on earth my mouth was touching that creature. There is not enough alcohol in the world to make him clean enough, especially knowing that multiple high school students have potentially been "kissing" him and depositing their germs onto him. And kids are not generally very good at cleaning things - look at their bedrooms or lockers. And with this high school having had confirmed cases of MRSA, and me having mouth sores and a compromised immune system that sealed the deal. Luckily I had contacted the teacher before hand and notified her that I wanted to take the class, but becaue of immune system issues I was not going to put my mouth on anything. In the past I have taken multiple CPR classes and not had to do the breathing component (or for one class I had been given a mouth barrier). She was fine with that and so instead of doing breaths I just properly positioned the head and leaned down. I'm sorry but I don't put my mouth on things that get around more than an heiress in Hollywood. Lets just hope if I really need to do CPR I remember to do the breaths and not just lean down and pretend!

Return to Spender

I often find myself wondering what I could do with all of the time I have wasted in my life. Like the hours I have wasted standing in the wrong line in stores – the line I choose confident it will move faster than the other lines only to have the person ahead of me pull out a check book or the cashier be unable to read the barcode on a pack of gum and be required to call for a price check in Tibet. Or perhaps the days wasted on hold calling doctors offices, companies, and other places that really should answer my telephone call crisply and cheerfully because I am paying them for their time. Then there are the useless months spent in classes through school that I have somehow erased from my entire memory system. Apparently I spent a semester in high school taking a course in communications and all I can remember is watching My So Called Life in class each week. I also spent three years taking German and the great extent of my vocabulary is the ability to sing My Hat Has Three Corners and to ask for a beer and a cheap prostitute. So if I am ever lost in Germany I can tell you how many corners are on your hat and spend the evening in interesting company. I can not ask for the bathroom, for help, for a taxi, or for the American Embassy but I can get beer and a prostitute. But not a high quality prostitute, because apparently that was above our standards, but a dirt cheap prostitute who is likely to leave you with a parting gift you will carry for the remainder of your life. Not that I need to worry, because were I to need a prostitute it would be only in the hopes that one would speak English and be able to translate for me so I could get back to whatever demented tour group had abandoned me. I find myself wishing that this time had been better directed – perhaps on learning things that actually pertain to my life. For example, no matter what we try to tell children I have yet to use the Pythagorean theorem outside of high school yet I could have really used some instructions on how to maintain a car – like opening the hood. Perhaps a peer tutoring system would have worked – you teach me to open the hood of my car, I teach you whatever academic skills you need that my nerd brain has made an abundance of connections for while skipping over things like gas is necessary to drive your vehicle. And those German months would have been better spent in Spanish or Sign Language or Farsi or Urdu or anything other than German. As I struggle to communicate with my families that do not speak English as a first language (or as a language) using translators and creativity, I wish that I had a brain for languages. Instead I have a brain for details and English, for memory and synthesis of information. However, I have a hard enough time retrieving the right English word in mid-conversation that trying to pull another language out of my over-packed mind is like trying to find a diamond lost in a desert at night. I want my time back to reuse – to learn functional topics rather than obscure mathematics and languages that will not help me unless I want a night in Berlin that I would rather forget, to make memories rather than to fidget way in lines and on hold, to live rather than to spend on pause.

Rambling in the first real Autumn Evening

This morning was blessedly, wonderfully, amazingly cold!! I was able to wear my favorite black zip up sweater that should be retired to the donation bag but is much too cuddly and beloved to be surrendered. It is so comforting and warm and easy to wash (hey, that is a way to score huge bonus points with me) that I really don't care if it makes me look slightly like a disheveled bag lady. :) Yes, I am that pathetic. My wardrobe 98% of the time is blue jeans, a basic shirt (polo shirts are common or a "nice" t-shirt in warm weather and I love sweaters and long sleeve t-shirts in cold weather), and whatever shoes I can find in the closet that match. I am teaching children who leak, who like to decorate the teacher as much as the art project, who love to dig in the dirt and crawl on the floor and I don't want to have to worry about my clothing being damaged. I want to be able to be a hands-on, full contact, in the trenches teacher not a pretty-in-a-dress teacher who never plays with the kids because they might get messy. I have taught my kids that everything in my classroom is washable - the tables, the toys, the floor, the kids, and yes - the teacher. Have fun!! Learn, discover, make a mess!! Follow the rules, listen when I ask you to do something but let's have fun!! Shaving cream on the table is great and if you want to get it up to your armpits that is wonderful. Fingerpainting is messy but awesome - if you want to try it on my table or the chairs I am not going to yell but please do not paint your friends. Digging in dirt is fun but we never throw what we find at others. Lets see what we can learn from painting different surfaces - the textures, what colors we make, requesting, exploring, participation. What can we learn from shaving cream - sensory fun, communication, participation, shapes (drawn in the cream), parts of a face (same), so much more. If you are afraid of a mess, you miss so much. Now today when my blue eyed boy somehow overflowed his diaper and soaked both of us as we were swinging in the awesome fall weather that was not a fun mess. Thankfully we are both washable. He found it hilarious and laughed when I complained about being wet. Boys! I laughed when I had to send him home in girls pants because all he had at school were shorts and it was too cold for them. He thought about it and then laughed too. Thankfully, washable me also keeps a change of clothes at school. My little ones also had a great time today wearing monster masks (Roar!), singing 10 little monsters and waiting for me to "scare" them by roaring, and playing a game that I loved as a kid - Don't Break the Ice. I managed to keep the attention of 4 three year olds for 20 minutes and convince them to take turns and share materials with this game!! Awesome!!!!! That is like convincing four countries who are all at war with each other to cease fire, meet together, declare peace, and trade their best resources for a century. I will most definitely remember that this game is valued more than gold in our room and will be used during desperate times and when we are working on our attention spans and our sharing abilities. Right now we are working on our "Hands are not for hitting" abilities. I love that book. I also find it intersting that one of my kids completely gets time out and hates it while my peer model, my typical peer who is supposed to demonstrate proper behavior but ends up hitting the other child back, does not care a bit if I resort to time out. I am sounding like my mother too - "I know he hit you but you can not hit him back. Tell a big person that he hit you. Go play with a different toy. Tell him no. But do NOT hit him." Gee, that sounds familiar. She cursed me when she told me that some day I would understand everything she said - I so understand it and now i am saying it not to a child of mine but to ten children that are "mine". But my brother still has the real payback in my spitfire of a niece. Little Bit is paybacks for anything either one of us ever did as a child and more. She is 30 pounds of solid attitude. I miss my Little Bit. And now that I have written a completely free flowing, good luck trying to connect the dots entry I am going to go enjoy the first real autumn evening with a cup of hot tea, my favorite fuzzy blanket, and an old favorite book. Autumn is my favorite season.

FYI

If you are in any way trying to receive money from me do not call me "honey", do not call me "dear", do not call me "sweetheart" and do not call me "hun". If you call on the telephone, I seriously advise against asking if my mother is home. She is at home - in Michigan. I highly recommend that you avoid whatever evil urge drives you to talk to me like I am still in diapers and high chairs and instead use your "big boy/girl voice". Don't worry, I can take it. But if you call me "dear" one more time? I may just have to kick you in the knees.

False Advertising

It is not just incredibly rude but dangerous to tease an exhausted teacher in search of caffeine with a huge Starbucks sign only to have there be a tiny sign in the window of the store (not visible from the road) that says "coming soon". It is not wise to tease one with such a desperate need for both sugar and caffeine that arises from having spent hours trying to contain and then educate preschoolers who want nothing more than to escape whatever limits you provide. Even moreso when said teacher still has a two hour class to attend that requires participation and attention. Starbucks, you have disappointed me. I was willing to sacrifice my soul and more money than you are worth to partake in your over-caffeinated and super-sweet coffee but you were not there. You led me on like a bad date and then dumped me when I needed you the most. Shame on you! So I turned you your closest competition for a rebound and was satisfied with my ice cream based, still heavily caffeinated coffee beverage and drove off to my meeting knowing that I don't need you Starbucks. You are not the only coffee in the sea of caffeine. So there! (Oh, I will see you in two weeks on my way to class - do you think you will be open by then?)

Invisible

I am both incredibly blessed and incredibly cursed with the fact that even though millions of cells inside my body have decided to try to overthrow the establishment there are no outward signs of war. There is no way to look at me and tell that it quite literally takes a village to keep me alive - a village of doctors, nurses, phlebotomists and lab technicians, pharmacists, drug manufacturers, chemists, researchers, and of course family members and friends. It is an incredible blessing because I am allowed to enter into the world on the other side without notice, I am able to keep secret all that rages inside and create an illusion of normalicy. There is an opportunity for others to see me and know me before I reveal to them the rest of my life. I can be more than the quick label of "the sick girl" or "the girl with lupus". Sometimes that illusion is a wonderful blessing because it is an escape for me, a chance to let myself completely forget this reality and submerge myself in the world beyond, in a place where life is not such a balancing act and there can be an easiness. Yet sometimes the illusion is a burden and a weight. When I am having a hard time it is difficult for others to comprehend what is going on because on the outside I appear no different. I am able to "fake it" through the day so it is hard for others to understand why I then go home and collapse into exhaustion instead of going out, running here and there, and being social. Being a good actress and unblemished by the war within makes it confusing - I can chase after my little ones all day and dance with them at circle time but I can not manage to join in with something after work? How do I explain just how much it costs me to do my job, to do what I love and to give everything I have to those little ones every day? How do I decide where the balancing point is in revelation - how much do I share so that others understand who I am and where I am coming from and how much do I keep hidden so that I can have some pretense of normalicy, some refuge from the pity that I detest? Sometimes I think it would be easier if there were something visible that let people know what I have to throw into my bag and carry along each day. Not because I want them to treat me any different, but because then maybe they would understand why I am the way I am - why some days I have lots of energy and others I am just trying to make it through, why I don't always participate in events, why it seems like I sometimes keep to myself, why I am so determined to live here and now, why I can look so good and feel so bad. And then I am thankful for the fact that in spite of everything I do look so good and it is so invisible, for the fact that I can hide it and go out into the world and live at least part of my life as if there were not those issues, for the fact that what looks so horrible written on paper looks so much better in person. A curse can be a blessing, a blessing a curse, amd both a gift when they are invisible.

Cheap and Easy

I discovered yesterday that while there are many things that can frustrate me during the course of the day, there are even more things that bring moments of joy. Most often these moments come not from big events but from the littlest things. It really does not take much to amuse me, to entertain me, and to bring a bit of joy to a day. Below is a small list of yesterday's moments that made me smile.

* No line at Chipotle when I finally had a chance to go get a meal after work (my first meal of the day at 4:30pm so is it breakfast, lunch or dinner? brunner?)

* making it to the gas station (and thank God for the bright red Idiot Light that reminds me that yes, genius, the car does indeed need gas)

* seeing one of my little ones from last year come to her first day of school this year

* being able to carry three lunch trays down the hall and not spilling a drop

* listening to an adult try in vain to correct the grammer of a three year old

* finishing a three step (over three days) art project with all of my little ones

* watching my little ones swing on their stomachs and "work up the courage" to lift up their legs

** seeing the other children at school say hi to my little ones and treat them not just with tolerance but acceptance and appreciation!!! This will make my day, week, month, and year!!

A Rose By Any Other Name...

Would a rose by any other name smell as sweet? Would it be as alluring if it was called stinkweed instead? What about if every time you smelled it you sneezed and coughed? How much of what we think "smells good" is cultural, how much is learned, and how much is hard-wired into everyone? I would hope that spoiled food smells bad to everyone, but for years my brother would eat things that had more hair on them than Robin Williams and claim that they were still good. My theory that dirty diapers smell bad to everyone is shot down by the kids who wear them in total oblivion to the fact that they can clear an entire room just by entering with that loaded weapon. Trash composting and turning nasty in the hot sun seems to smell bad to most people, but I am sure there are exceptions. Culturally I know that there are things that some of my friends thought smelled great that I did not like, usually related to foods although perfume choice was sometimes different too. I liked that what I thought smelled good sometimes smelled bad to them too. Personally, I hate the smell of banana. I like eating bananas, but a strong banana smell is enough to make my throat close up. Freaky until you realize that for almost a year I had to take a liquid medication three times a day that was flavord with a horrid banana flavoring to try to mask its undrelying nastiness. I also can not stand the smell of regular/vanilla pediasure, ensure, or slimfast (it smells too much like the first two). Odd until you consider the number of tube feedings I have run with those products, the number of times I have had a child later return them to me, and the fact that the last child I tube fed is no longer here. I like the smell of baby formula on a baby's breath when it is warm, sweet, and sometimes just a hint off of fresh. It reminds me of all of the times I would take care of Lil' Bit and how fast she is growing up (my niece), as well as all of the little ones I watched when in school. I like the smell of a car when it is extremely hot in the summer, so hot that you can hardly stand to be inside of the car and you want to blast the air conditioning higher than ever before. For some reason I can not explain, that heat combined with the rich warm smell reminds me that I am physically, in-my-body alive more than just about any other single, random experience. I know, I am odd. I also love the smells of fresh cut grass (in spite of allergies), fresh brewed coffee, baby powder, vanilla, and butterscotch candies as they melt on someone's breath. I strongly dislike the smell of bleach, the smell of rubbing alcohol, and the smell of muddy ground (it smells like worms). My favorite smell though is one that is hard to explain - it is the smell of a preschooler who has had a great day at school and is giving you a hug goodbye or cuddling with you to read a book or sitting on your lap to color a picture or swinging with you outside. Sometimes there is a bit of baby powder smell, often No More Tears shampoo, a hint of milk, some left over bits of whatever smells we used (i.e. fingerpaint, shaving cream), outdoors, and the final traces of those baby smells all combined. So would a rose by any other name smell as sweet? Do I really care? Smell it - if you like it call it whatever you want and enjoy. If not, well call it stinky and find something better to stick your nose into. :)

But I can't Juggle...

Tomorrow I have an appointment with a new hematologist (also an oncologist). My first reason for going is that my current primary care doctor has been unable to control the rat poison levels for the Lupus Anticoagulant and I am getting tired of changing doses so often. I am also tired of having to drive so far for a finger stick, especially when the level is never right. When I moved here my level was stable and had not needed to be adjusted in 6 months - it has not been stable in over a year. So task one is to get the PT/INR under control so that it is safer and I can stop spending half of the time hiding bruises. The second reason for going is that no one seems able to explain these lumps that continue to make their presence known and I would like a final answer. I am hoping that it will be easy to determine that they are benign and they can be dealt with without any major difficulty. I just need concrete answers. Especially with the lump on my ribs now sticking out close to an inch when I take a deep breath in (when my ribs are most prominent) and my ribs are aching more and more often. I am feeling like a broken record here - and if I could not actually see these lumps I would question my sanity. I am hesitant to say too much about them tomorrow because with the scans not showing enough to be helpful I am unsure what he is going to think, but I need someone to be willing to help, to find an answer, and to not be quick to dismiss things. With my history I am often a doctor's worst nightmare - just taking a history takes forever. Ugh! Sometimes I wish that I could just deal with "normal" things for a while - but then I realize that this is normal for me. Normal is juggling what you have been given and praying that whatever you drop is going to bounce instead of explode. So I am tossing things up into the air like mad, trying to catch them as they fall, and desperately praying that whatever I miss bounces instead of exploding into chaos all around me. Sounds normal to me! With that in mind I am going to throw tomorrow's appointment up into the air and we shall see if I catch it, if it bounces, or if it explodes. If you happen to see me running, try to keep up!! :)

Normal

College is supposed to be a time when you explore all sorts of new concepts - new ideas that you are being exposed to both in the classroom and outside, new people that you are meeting, new roles that you are trying on, new possibilities. Educationally I could not have found a better college. In all other respects I fit in about as well as a surfboard in Alaska (crappy analogy). I fully understand the great power of shunning in communities such as the Amish. All because I was not wealthy, not super-model thin, and not willing to sell myself to whatever values were considered popular that week. So it has been a very long time since I have felt normal and accepted. It has been a very long time since I have forgotten that I was in exile for being inside of a body that is damaged goods, for growing up in the wrong parts of town, and for not being ashamed of either.
On Tuesday I went with a friend to a really cool town not terribly far from here (within a reasonable drive) that I have been wanting to visit. It is a small town set back away from the crazy edge of city life that surrounds it, right on a river, and it is made up of these unique stores and restaurants (mainly bakeries and cafes). The buildings are almost all historic and maintained appropriately (or as appropriately as possible) and it is really quaint. I had so much fun! More than fun, while walking up and down the streets, wandering in and out of stores and chatting about this and that I felt something I had not felt in a long time. I felt amazingly normal. I did not feel like an outsider. I did not feel like someone separate or damaged or marked or not quite equal. I did not feel unworthy or less or like I needed to walk a tightrope. I felt perfectly, beautifully normal. I was physically doing things that I could not have done two years ago, I was enjoying a rare beautiful day, I was laughing, I was not worring about what others thought of me, I was having fun, I was being me. That day was a more precious gift than my friend will ever know. Not only was it a great distraction following Monday's crappy news, it was a gift of seeing myself as more than I had seen myself in a very long time. Plus it was just an all around interesting and fun day.
I posted pictures that I took to my Flickr account. I did not take nearly as many as I wanted to take - I guess I will have to go back there soon. :)

Virgin?

Yesterday after packing the last box, slapping on the last label, wrapping up seven files (one of which the school had never even entered into the system - nice!), and carting three vehicle loads of stuff to summer school I had my paper signed and turned in my key. My first year as a teacher is signed, sealed, and completed. I can not yet process that, so instead I decided to celebrate by taking my mom out to dinner as she is visiting from home. We went to a local bar-b-que restaurant that has good food and decent prices and I decided to have a drink because it had been quite the day, week, month, year. So I ordered a strawberry-pina colada and no questions were asked. My drink arrived and I was surprised by how incredibly sweet it was and how cheap they were with the alcohol because I could not taste any but decided that it was not necessarily bad tasting. Our food then arrived and I decided to not say anything because I had not eaten all day and just wanted to enjoy a good meal. I did notice that there were no effects from the drink and, well, I would be a cheap date in terms of drinks because while I have never been drunk I can tell that I have had a drink after just one. So the bill arrived and printed neatly on it was "Virgin strwbry colada". The manager who took our drink order assumed that I not only was underage but so underage that it was not even worth askng for my ID to check and plaed the order for a virgin drink. I did not know whether to laugh or to be offended. So I informed our waitress, who looked barely legal herself, and let the offended side explain the situation. My virgin drink was free but I received no apology. So now I look so young that they do not even think to card me? Nice! I made sure to save the receipt because it is a classic and once we were in the car the laughter exploded. I am almost 26 and I still do not pass for 21 yet - or apparently anything near 21. Ugh! And everyone who reassures me that I will love it when I am 60 - that so does not help anything! And when I am 60 and want senior citizen discounts I am sure it will piss me off to have to drag out my ID each time then too! :) Lord help me if I try to go somewhere truly forbidden, like a Casino or a night club! Sixteen year old highschool kids can get drinks with fake IDs easier than I can when I am honestly 5 years older than is required. So the moral of the story is just because the drinker is a virgin does not mean the drink must be a virgin as well.