Magical Thinking

Yesterday I ate dinner at 8:30pm because I had been working at school all day and managed to trigger a decent autonomic crash by the afternoon. Normally that would have meant that the rest of the day was spent lying either in bed or on the couch semi-conscious but yesterday that was not an option. Instead I chugged an incredible amount of caffeine to try and force my blood pressure and heartrate back up towards normal, took a dose of pain medication to try to combat the incredible headache, and laid flat just long enough for everythng to balance again (i.e. vision to return to normal from headache, shaking to stop, headache to settle to a dull background noise). Then it was back to work. I love my job and would never want to do anything other than teach/work with children but this is a job that has no set hours and that you almost always bring home with you. I finally stopped working around 11:00 pm and crawled into bed. I was awake at 5:30 am. I predict that my body has at least one attempt at a temper tantrum today because against my will it demands a lot more sleep than it got last night. Today I will be prepared with caffeine and tylenol in my bag (tylenol is kind of a joke but I refuse to take anything stronger at work). This week before school starts is spent chasing yourself - a meetinghere and here and here, a parent visit there, an entire classroom to unpack, an assistant who has never worked with preschool before and has no idea what she is in for this year. I am really regreting the three years I wasted takig German in high school and wishing that I had been smart enough to realize that I would need Spanish a great deal more here in America than I would need to be able to order a beer an a prostitute in Berlin (my German teacher is a whole other long story).
So amidst all of this chaos I am working hard at the magical powers of my mind. As long as I do not accept that my body is revolting against me then there is nothing wrong. I do not have time to be sick, I do not have time to deal with these tumors growing, and therefore it is not occurring. As long as I believe that there is nothing wrong then there is nothing wrong. Sounds good to me. Besides, I have no idea how I could afford more doctors appointments and tests and medications. I am blessed to have decent insurance but the copays are breaking me. Teaching is one of the greatest professions with the greatest rewards, but they are never monitary. Maybe I will stick a toe back into reality once the school year has started. Once the kids are in class, the parents are comfortable with the class, and I have a schedule down. Maybe then I can add one more thing to my juggling routine. Until then I will practice the great powers of my mind...and maybe just a hint of denial?

Catch Up

There is so much to write and yet I can not figure out how to get it all out. Words are usually so easy for me. Poetry is my favorite way to explore my world, to sculpt and paint. Yet my poems are also sacred to me because they contain so much of my own soul and thus I rarely let anyone read them. Strange that I would create something but not share it. Prose is not as much fun for me because there is less lyric to it, less bending and curving of the words and more restraint on how the art can be formed. Because it is more restrained, it has less of myself in it and thus I am more willing to share it. This type of random writing about my life would seem most personal and yet it is the easiest for me to share. However, it is also the least skilled of my writing and the least artistic. When writing in other ways I can bend words and find a rhythm and harmony but when just writing free about my own life the flow and music is difficult to discern. That is why I keep this mostly as a record for myself. My journal writing is not an art for me. It is simple, it is plain, and often I struggle to find the words where in other writing they would fall so easly and curve perfectly beneath my fingers.
This past month has been one of chaos, feigned ignorance, and tremendous growth. Summer school ended as chaotically as it began and we had a bumper crop of chicken pox, thrush, pink eye, and vomit. My sandal will never be the same. Yet we also had sweet children who worked hard, stole hearts, and had fun. My two day tour of DC was painful (never wear new shoes when walking in a city - I am indeed that stupid and earned the blisters to prove it), hot (over 100 degrees) and intriguing. I can not wait for another opportunity to return so I can explore more museums and history. Being here in Michigan has been precious. My Little Bit is growing up far too fast, my family is able to see just how different I am after this year of trial and forging, and I have exploded into a self I never imagined. I have been living with a desire to not miss a moment that has formed inside my soul and I do not want to lose that passion because I have discovered how much joy can come from simple things and how much you can get from an ordinary day. I also claimed my body as my own, as more than damaged goods and broken parts, and has the most gorgeous image tattooed onto the back of my shoulder. This runs contrary to the "little miss perfect" image that I have worn all of my life. :) It is also most likely in violation to every rule ever given to me by every doctor I have ever seen but I am now 26 years old and I am tired of living in fear of my own body. I needed to claim it as mine, to take back some control over it, and risks are a part of really being alive. I love it and would nto change my decision. I also cut my hair significantly so that my little ones can stop using it as a convenient pull toy when I teach. I have been ignoring the fact that my lumps and bumps are steadily getting bigger and my ribs hurt more frequently. I will deal with it once school has started and I can get in to one of the new doctors my rheumatologist recommended. Unfortunately the scans were not worth crap and so we are stuck back at the beginning with the knowledge that there is something there but unsure what they are or why they are there. So I ignore them and live in the moment.
Right now it is raining outside, a perfect soft and steady summer rain. It has been a long time since it has rained like this and I am ready to go outside and enjoy it. However, I most definitely will not be singing in the rain - I am not so delusional as to think I can hit a single note!

Not on the First Date*

I am old fashioned, quaint, simple, whatever adjective you would like to use. It is my practice to not allow strangers to undress me, most definitely not the first time that I meet them. So how I ended up lying perfectly still on a table on Friday while two complete strangers removed my pants is quite the experience. My first sign that perhaps it was not going to be the best day for critical medical testing was when I wrote down the date - Friday, July 13. Nice! How did I manage to schedule these tests for Friday the 13th? I am usually not superstitious but that just seemed like a glaring "Hey Stupid! Here's Your Sign!" to me. The next hint of the fun to come was the fact that it took 1 hour 40 minutes to find the place that was 40 minutes away. Thank you google maps! I was lulled back into complacency by the fact that the Chest CT went according to schedule. The nurse/radiologist even got in a great IV on the first try - that counts as major bonus points for anyone. Even more points for the fact that there is only a tiny bruise two days later. So I then head over to the MRI building. I am convinced this will be uncomfortable but not bad. I forgot that this is Friday the 13th. I forgot that this is me - that I am a lightning rod for freakishly odd things and stupid mistakes. So they call me back and I am expecting to have to change clothes (I bring a change of clothes because I have issues with hospital gowns - lots of issues with hospital gowns). Instead the girl says that I should be fine even with my very metal pants (lots of zippers and buttons) and my very metal belt. I question this but she is confident. Mistake #1 - I should have insisted on changing into my non-metal shorts that I brought along. She then leads me into the room where my wire framed glasses are confiscated and my sneakers that have tiny metal rims around the fasteners. Mistake #2 - not insisting I return to the changing room and put on my non-metal shorts. So then the fun of positioning begins. I ended up lying on my left side (painful thanks to the knob, blob, glob, mass on my ribs/chest) with my left arm extended out along side my body rotated palm upward and my body touching my arm but rotated slightly away. Sound confusing? Yes. Sound painful? Hell Yes! I am ever so greatful for every pound I lost over the past year because I do not see how I could have fit if I weighed another 5 pounds - and I am padded but not "Oh My God" fat. I can shop in either regular size sections or "Fat Girl" size sections depending on which has the best sales. :) So back to the MRI. As I enter the MRI the magnet discovers my belt and suddenly my hips are being lifted off of the table. I feel like David Copperfield only a bit afraid that this could end in disaster. Mistake #3 - I should have yelled for them to turn off the machine and let me change into my non-metal shorts. I somehow levitate into the machine and plop back onto the table. They begin the testing and come back in to try a new position because the images are funny. Hmm...metal pants anyone? So we repeat the levitation experience and I repeat Mistake #3. Finally they come back in and tell me that I am going to need to change into a gown (wait, I have non metal shorts people!) because there is too much metal on my pants. Okay, did I not say that way back at the beginning? Then the older woman says she has an idea but I am free to say no. If I am willing, they can help me take of my pants without unstrapping my arm and cover me with a gown (I HATE GOWNS) and then we do nto have to realign everything and we can just finish the test so much faster. By that point I would have sold my family members to have the test done because my left arm was cold, numb, and no longer responding as a part of my body. My left ribs were very much telling me they were a part of my body and were not going to allow me to forget them. My right shoulder and hip were joning in because I could not move them as they were either pressed up against the machine or strapped in place. Thus my dignity went out the window and I was stripped by wo complete strangers whom I could not even see because my glasses were safely outside the pull of the magnet. Thank God I had on nice underwear! :) 30 minutes later we were finally done and I ended up wearing the stinking gown and carrying my metal pants back to the changing room where my non-metal shorts were neatly waiting in my bag. When I was handed my pants the girl warned me to "Be very careful! Do not walk too close to the machine while holding those!" Um, sweetheart, you put me INTO the machine while I was wearing them! Thank you for making me feel so safe. I hope you enjoyed looking at my pink flowered underwear. You should feel special because usually, I don't do that on the first date and you are SO not my type! Now the cute guy behind the desk.... :) I should get the results from the testing on Monday and we can figure out what to do from there. Based on the increasing pain and the fact that the third lump that the doctor did not officialy diagnose is growing we need to do something, and pretty soon. Also there is an area on my back, around from my chest lump, bump, knob, blob that is really hurting. I am hoping it is referred pain from a nerve being pressed on around front. Honestly, I am scared. The masses are now not only palpable but visible on my arm and chest. This sucks and I am trying to hold it together. I just want answers and a plan. And to not have to show anyone else my pink flowered underwear on the first date. :)

* This is a rewrite of a post I put up yesterday.

Organized Chaos

I love my job because with children you can have the greatest plans of all time, you could write the lesson plans that would make professors weep with joy, and if the children are not in the mood to participate there is no force on earth strong enough to convince them otherwise. I love the unpredictability, the need t constantly be thinking and rethinking, the fact that it is a job that is absolutely alive and in the moment, and most of all the tiny little lives that are at the center of it. The screaming and crying, the diapers, the occasional returned food item that had been partially ingested, the contest to see who can throw themselves to the floor with the most drama (I usually win...I mean, um, the kids seem to love this game) are all just side distractions. Now I may need to be reminded of this the next time I have one child returning lunch while another is beating a friend over the head with any of an assortment of options and a third is trying to sneak out the door. :) So far summer school has been organized chaos. We have managed to keep track of every child, to actually teach (as in do individual work and some small group work), and to get through the daily curriculum. However, we have not been having all of the kids show up. Should all 17 ever appear at once, we are officially in deep trouble. As it is getting to and from any location is a lot like herding wild mustangs that want nothing more than to escape and run free. Stubborn, determined, and willing to use whatever tricks might work to escape. :) But they have also surprised us with their abilities to engage in great play all together, to follow directions (some more than others - my little tazmanian Devil is so testing everything), and to have fun. This is the perfect fun and distraction that I have needed. Now if only it was not 100 degrees outside (and 90 degrees inside). Ugh!!! I think it is time to do a water activity today!!

Anticipation

In just a few minutes I will be leaving to begin my first day teaching summer school. At our staff meeting a week ago it was made clear to us what our objective was for the first day - keep every child alive and accounted for until we send them home again. Why do I get the strange feeling that the first day of summer school is somehow more chaotic and stressful and frenzied than the first day of school? We were told to expect nothing less than total chaos. I teach preschool - we are experts in total chaos. We drag chaos along with us like a ratty but much loved blanket. We can do chaos. We were also told that there would be one fire drill this summer...apparently she did not read any of the information on my eighteen precious little ones because, well, we have trouble resisting that shiny red box on the wall with the neat red handle that says "Pull Down". I foresee more than one fire drill and I foresee it being courtesy of my class. You know, just to keep everyone on their toes. :) Because we are all about safety like that. Just like I am all about leaving our little smellies wrapped up in bags out in the hall because when in a room without a window there is not going to be anywhere to run or hide from the diapers even after we change them. Think anyone would mind? ;) And I am most definitely gently placing a name tag on the back of each child as they arrive because we are terribly outnumbered and I need to know which child is climbing Mount Junk in the back of the room and which one is running half naked down the hall. For some reason they respond better when you use the correct name - go figure! If nothing else, today is going to be a day I will never forget!

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. :)

Sharp Left Turn?

tumor
noun
an abnormal new mass of tissue that serves no purpose


tu·mor (tmr, ty-)
n.
An abnormal growth of tissue resulting from uncontrolled, progressive multiplication of cells and serving no physiological function; a neoplasm.
A swollen part; a swelling. (Thank You Dictionary.com)

In general I love words. I devour books and consume anything that I can read. Words are the most powerful beings to me, the things which allow me to comprehend and to explore, to express myself to and delight in the world around me. There are dozens of notebooks throughout my life and my home filled with words that have poured out of me. I never wanted to write the ugly word above. Sometimes it is absolutely awful to be right. For months I have been trying to tell my doctor that the lump, bump, knot, knob, blob, pain in my arm is growing. First it was nothing. Then it was the lymphadema and scar tissue. Then my side started hurting. Then it was the Lupus because both sites are over bones and muscles. Then there was a swelling over my hip that could have been a lymph node so it was scanned but since nothing showed up forgotten. Then he finally decided to do an ultrasound on my arm because I was insistent and my arm is significantly larger than the other. Oh, and I have a blood clotting disorder that places me at high risk for blood clots even when on proper medication. Only problem was that the soonest available appointment was four weeks away and he was fine with that. Enter my second opinion - a visit to the emergency room which cost me $100 but proved there were no clots. I also visited the rheumatologist and proved that I have no active lupus or autoimmune disease at this time. I had the second ultrasound done that showed nothing and he was content to write it off. Umm, No. By now my arm has a clearly visible and palpable lump, bump, knot, knob, blob that anyone can feel - it is between a shooter marble and a golf ball. My ribs have a definitely palpable lump, bump, knot, knob, blob that anyone can feel - it is more like a golf ball. Both hurt and are growing.
So I made an appointment and went in today. For the first time he really felt them. A little light bulb went on over his head. I am not losing my mind. He thinks they are lipomas but they are definitely masses, tumors. Gulp. I asked how we could know for sure and he said that the only way would be a biopsy with removal of the whole thing and did I really want that? Um, right now Hell YEAH I want these things out! I know that with dysautonomia and the Lupus Anticoagulant and the PFO in my heart I am a surgeons worst nightmare. I know that with the fact that I do not respond to anesthesia and sedation this would be quite tricky. But every cell in my body is screaming - get them the hell out of here! He was content to call them lipomas and smile. Um, nice try buddy boy but they are growing in me and I am not letting them move into the neighborhood without a background check. He said it would be difficult to convince the insurance - like I really care about the insurance right about now? I will argue with them and do whatever is necessary but that should never be the deciding factor in doing what is medically necessary. He decided to ask a few more questions.

Do they hurt? Um where were you a few minutes ago?!?
Are they growing? See above. My real response: "Um, yeah. The one on my arm is definitely bigger and, well, six months ago there was nothing on my ribs."
Anything Else? Yes, it hurts to take a deep breath now.

Those three seemed to get his attention. I have a CT scan of the chest and an MRI of my arm in two weeks. Two weeks is not bad when looked at from the outside, but from in here - I want them to be tomorrow. I want to know now. I want answers. I want to be on the other side of this not knowing. Is this a speed bump or a sharp left turn? Will this be a minor detour or an alternate route?

All of this was written without stopping to think about it, edit it, or any of the normal things I do when I write here. It is raw emotions. For better or worse raw is all I have to offer. For the next two weeks I will do what I know how to do - dust myself off and live in the moment. I may just live those moments with even more passion. Sometimes the best scenery is along the detour you never intended to take.