It's been a while

Life gets crazy.

I'm still on the Coumadin and iron pills.

We had to take up ALL of the carpet in our new studio space so we could put the floor down.

Weird Al concert was fantastic!

Nothing much to report. Here's a kitty.

Lump Day

For today is the day that Fahnz and StepS and I will lounge about the house and do nothing.

It's been an aggravating week. Last Friday (6th) I had a little pain in my right calf and shortness of breath and off I went to the ER, because when you have a history of clots you do not take any chances. All clear. Cool, and home we go at around 9:30. Of course we had to experience the mandatory Drunk Crazy Guy in the ER on a Friday. I did not know that curses as such existed in the English language but you learn something new every day.

Monday night in class I jump. Just a little jump. I land. OH DEAR. Emergency room, I am returning. I had an x-ray and another ultrasound, Mum got near-hit upon by a couple of drunks, and we didn't get home until 1:00 am. Now in addition to coumadin and iron pills and general tiredness I more than likely have a torn calf muscle. Thank goodness for my GP, who I am going to see tomorrow. And thank goodness for Vicodin, without which I could not have made it through the day.

Break

We're off classes the last week in May, so I'm going to dig in and finish 5.

It's a collection of stories about women--and they all take place around the same antique table. Five stories, five pages each. Five moments of decision and faith and love.

Now if I could just find the table...

Quotage

"But in the ruins there is still a canvas. There is still beauty in your brokenness. The faded scars show healing, reminding me that even though I've been in dark places, I've survived and learned and become stronger."

Ah yes.

From this beautiful site. Long live beauty in all its forms.

Laundry

Fahnz has been working with the studio camera for the past few weeks. He has taken pictures of trees, clouds, cats, family members, and dancers. My favorite picture out of all of his work is this.

Happy kitty in a pile of laundry.

One year ago today

I almost died.

I came back.

I found out I had blood clots. I still do, but not as many.

I realized the true depth and strength of my bond with my husband and family.

I accepted my darkest secret, forgave myself for it, and put it away forever.

I stopped smoking, because I had no choice.

I did not come home from the studio.

I realized how much I am loved and needed in this world.

One year ago today, I was reborn.

Been gone

Too busy. Life catches up with you, tackles you around the ankles and jumps up and down on your stomach.

So I'm on a reduced dose and my target INR is now 1.5 to 2.0. Not too shabby. Now if this rain would get out of town I'd be out there walking.

I've already requested my clotiversary dinner for after I come home from the studio next Tuesday. Fahnz makes these ridiculously good quesadillas with out of control melty cheese and perfectly sauteed peppers. Then I will have cake.

It's odd realizing that a year ago I almost died. But I got me a nifty t-shirt as a Yay, I made it! present and I plan on celebrating the hell out of being alive.

Two more days

Tuesday, April 12th, 1:40 pm.

I want this to be over.

I worry about Round Thing sometimes

No idea why this happens.

SO TIRED

Here's what I'm hoping:

Next week they take me off Coumadin. After a month off they retest me and all is well and I never have to take it again EVER.

Realistically I know that might not happen, but the anxiety and stress over not knowing is crushing me. I can't sleep. I'm editing music for the recital and just started crying. It's been a very hard year and it's not over and I just want to rest for a while. Not physically, although I've been fighting off Coumadin-induced fatigue for the last eleven months.

My soul is tired.

Nap Time

I concur, kitties.

Now fight.

I don’t talk much about the emotional impact of a catastrophic illness because it’s not something people like to hear about. I haven’t discussed the near-death experience because no one really wants to know what it’s like. People just want to know that I’m happy and functional, which is exactly what they deserve to know about me--we all need to hear the positives in daily life because it helps us feel better about the crazy world we live in. But when something comes along that draws out every emotion I have had in the past year, be they good feelings or bad, it’s like the door to a dark room has been opened and I can finally see a way through to the end.

Enter “Sucker Punch.” It’s divided the movie-going public and critics alike, spawning debate after debate about the truth of the storyline and the necessity to spoon-feed meaning to the viewer. Gone are the days when we can sit back and muse about the purpose of things. We’ve become a short attention span society that wants machines to do all of our thinking. Zach Snyder takes that notion, flips it back in our faces, and challenges us to decipher life on our own. Sadly, it seems like people don’t get it. It’s a scary path we’re heading down if we abdicate critical thought and our capacity for wisdom, and we are losing touch with the very things that makes us human--curiosity and imagination.

The movie begins with a whisper, with Emily Browning’s voice urging us into Babydoll’s dream. Snyder tells us everything we need to know about this girl’s desperation without a single spoken word. We are there with her when her mind is shattered by the blunt force of grief and anger. We follow her as she is driven, lost and asleep, to an asylum. We see the inmates, the doctors, and we see them as characters in a charade of hope. Two men discuss her future as if she cannot hear, and maybe she can’t. She’s broken by then, completely alone and at the mercy of a system that treated wayward girls as a threat to the fabric of society. She will never belong to herself again.

Snyder does not show us every detail of the five days, choosing instead to take us into Babydoll’s interpretation of her last week as a functional being. Her world is fully realized, picking and choosing friends to help her from the defeated creatures we see in the asylum when she first arrives. This is not an unfamiliar place to her. Perhaps this is where she would go when her stepfather visited her in the night, when her mother was dying, when she was alone with her thoughts and fears. This is the launch pad for an adventure in self-discovery, the last gasp of a young woman who is taking back control of her life even if it kills her. This is the part of her that, no matter what, will always remain free.

Now, imagine that you’re in the hospital. You’ve just been told that you should be dead. There’s an IV in your hand that’s delivering medicine to thin your rebellious blood and your lungs are full of clots. Where do you go from there?

For me, there was no question that I would survive. I had been married only seven months and the studio was starting to flourish. I had everything to live for, but like Babydoll and the others I was still trapped, looking from the outside in at a body that had become a battleground. So I dreamed. One night my clots were little blobs with sharp teeth that could only be destroyed by shining a bright purple light on them, the next they were soldiers marching through a maze while I shot arrows at them from a balloon. None of it made any real sense but the more I dreamed, the more I felt like I was shifting the balance of my healing, dissolving the clots that threatened my life through sheer force of will.

As I watched this movie, everything I had been through over the past year came crashing down on me like a tidal wave. My life is a series of numbers, blood draws, mornings spent trying to convince my stiff legs to swing out of bed so I could stand up and start my day and nights spent staring at the ceiling, praying that I could go to sleep without the creeping fear of the clots coming back to finish the job. As unrealistic as that is, at least it’s a fear that is universal amongst embolism survivors so I don’t feel as alone when my leg hurts and my lungs are burning. Those of us who have walked up to the edge have been able to let everything go. Maybe that’s where the fantasy comes in.

My care team became wise men and women, advising me in dreams and in life, but I always went into battle alone. Perhaps it’s because I never wanted to be pitied or coddled and treated like glass, fragile and teeming with the potential for self-destruction, but I spent very little time telling other people exactly what I was feeling and thinking. I wanted them to know that I wasn’t a victim, that I would still be the same strong person I was before the embolism, that I was better than before. I wanted to inspire and educate and push them to really think about the way we care for other people and how to live life unselfishly. Unless this world stops relying on impersonal communications and instant gratification and starts demanding better things from everyone in it, I fear we will forget these things. So put aside your attempts at cynicism and put yourself into Babydoll’s mind, and let your imagination run free. You still have one, I hope.

Sucker Punch was the near-death vision I didn't have last year when I fell down the rabbit hole into a darkness that I have kept at bay through dreams and the joy of still being alive. Sucker Punch reminded me to live and to reach out to the people around me and share the best of me, because at the moment this is all I have to give. My treatment is about to end. My war is soon to be over, and a truce declared between me and my body, but Sucker Punch has inspired me to continue fighting and fully claim the title of “survivor” that I have had such a tenuous grasp on for the past year. I have all the weapons I need.

Today's mood

Milton does not want to go for a walk.

Hell yeah, Milton. Fight the power.

Just when you thought it was safe

Three more weeks on the Coumadin.

I've tried to avoid complaining about this stuff as much as I can but we're in the home stretch and if I don't start venting now my head might explode.

So here's what happens. If you do not eat at all, Coumadin runs rampant through your system and makes damn sure your blood doesn't clot for any reason. The slower the clotting, the higher your INR, the more you bleed, and the less you feel like doing anything because a high INR also renders you achy and tired. Add the flu. Mix it all together and you're borderline anemic and on iron pills.

MORE PILLS. I have heretofore been remarkably calm about all of this, at least publicly, because I don't want to be "that person" who comes off as whiny and needy of sympathy and attention. But dammit, MORE PILLS. I can't stand this shit.

On a positive note, I am more likely to blow this off after a few hours. I think I shall return to my housework and try to not think about my additional medical drama.

Fun times

I am starting a chain email. I will not disclose the nature of such, you just have to trust me.

Leave your email address in the comments if you're interested!

Choice

Daughter's eyes were wide. A sixteen-year-old claiming her own destiny so thoroughly was alien to her modern sensibility. In her family and in families around them, girls remained so until they were mothers in their own right and even then there was always that feeling of generational division, and women were just now coming to realize that if a man raised his hand to them, they didn't have to stay and take it and make things better. But this did explain quite a bit about mother and her constant pushing at daughter to do something more with her life Never settle for someone just because he doesn't remind you of your father was mother's favorite mantra.

Catherine

When a man lost his wife, he was pitied and looked at and talked about in whispers. Women would greet him at his door with baked goods and blankets and prayers for the departed. Mothers would bring their children over to sit on his porch as living reminders that there is more than loss to look forward to, and eventually he would spend more time in the field than in his house, and then he would remarry, if he was still young enough. Catherine's father chose to become smaller and smaller in the face of his grief, and eventually vanished two days before she had her fourteenth birthday. Visits to the cemetery where Catherine's mother and two younger sisters were laid to rest always revealed signs of a mysterious visitor to the graves. Flowers from no one, a prayer book in familiar handwriting, and once a year a single white feather would quiver atop her mother's headstone before blowing away into the trees beyond.

MEK All day every day

I think I need to take more MEK pictures.

Forward

So there I was in a parking lot wearing last night's makeup and hair and three days' worth of self-loathing and my roommate's two-sizes-too-large sweatpants. I was grateful that she'd been able to move in so quickly after he left, and impressed by the speed at which she was able to convince the landlord to add her name to the lease, and so very tired. There's something about sudden heartbreak that wears you out. Perhaps the initial adrenaline rush after the shock of finding yourself alone and half your life taken away in a moving van is only meant to sustain you for an hour or two. Then you're left in an empty space, there to be exhausted by your circumstances. Or by an overly chatty roommate.

5 pages each.

What Women Know

The first time I saw “Women of The Cove” was at Webster University, back when Jennifer was beginning to shape the piece into the tour de force it would become. It was always a beautiful dance, full of rising and falling, moments of sadness and flashes of joy, dancers saying with movement what so many women throughout history always knew but were never able to speak aloud: We are all we have. This dance is a history lesson wrapped in an exhortation to lift each other, help each other, carry each other down the path of life that none of us ever walk down by ourselves–the problem is we have become immune to each other’s company thanks to computers and wireless phones, and we’ve lost our sense of community and our ability to admit that yes, we do need each other.

“Women of The Cove” seeks to remind us that there was a time that community was not just the group of buildings that make up a city block, it was the circle of humanity that you were born into, or moved into, and the only way to survive was to embrace your circle and live your life for the common purpose which, not just in the case of the citizens of Cades Cove but in the case of those of us living today, is simply this: Make the world better by giving the best of yourself. The dancers represent all the women who came before our generation, which has the luxury of relying on technology to soften our lives and keep us safe. The women who came before us did not have such indulgences. They only had each other.

From the Cades Cove Preservation Association:

The growth of the Cades Cove community was dependent upon new arrivals from remote places and from resident births. The early births in the pioneer families were anticipated with happiness but also with apprehension due to the harsh, isolated conditions and the absence of medically trained neighbors to assure the health and survival of child and mother. Initially, doctors were nonexistent requiring the women to independently do “the best they could” using their natural instincts and the knowledge which they transported into the Cove. The father would assist as best possible with much less instinct and intelligence in such matters. Too many children and mothers did not survive the birthing process.

Eventually, both out of necessity and training, midwives, the Angels of the Cove, appeared to assist in the birthing process, to support the early days of the child and to assure the recovery of the mother. They became affectionately called “granny women”. As many babies were born to midwives as were delivered by doctors. Many mothers actually preferred the kind and knowledgeable hands of the midwife. These were neighbors’ hands which shared common experiences. They carried the Bible, hoed the corn, washed the clothes, kindled the stove, wove the cloth and caressed the fevered brow. They cared about the Cove and the people who were the Cove. They typically had experienced the pain, joy, and sometimes agony of childbirth. They were experienced in the process and appreciated the value and beauty of new life to the family and the community. It’s no wonder that the women displayed confidence in the Cove “granny women”.

I did not see “Women of The Cove” again until March 4th, 2011, when it was performed by Common Thread Contemporary Dance Company at COCA on a rainy Friday night. This time I was seeing it through the lens of life experience, including a marriage, divorce, second marriage, and hospitalization for a major illness. This time I felt what it was like to have someone hold me up and carry me, to do the same for another woman who needed love and support and care. I was seeing it performed by strong women, powerful dancers with beautiful souls, some of whom had had to make hard choices in their lives–and then, as they stood in line with their hands covering their mouths, they disappeared. In their places stood the spirits of the women of the cove, the midwives and the mothers, the workers in the fields and in the home. And they danced for us, and told us what they knew, and reminded us that there is only one common purpose: Make the world better by giving the best of yourself.

Save the puppies!

http://www.give2gether.com/projects/Raven-Woods-Animal-Sanctuary/

Give, give, give.

Common Thread

http://commonthreaddance.com/

My sister's beautiful new company. Guess who the webmaster is?

(hint--it's me)

Musings

I am in the process of giving up coffee.

Yep. Had my first cup since Monday this morning. Between that and the sleep aids (which I gave up three weeks ago) I was getting to be a bit of a mess--jittery from drinking incredible amounts of coffee to wake me up from taking sleep aids that were turning me into an over-reactive, over-emotional, sobbing shell of a human being. I am drinking incredible amounts of water right now--we Coumadin Chicks have to keep well-hydrated--and so far it's helped.

The problem with Coumadin (sounds like a Mamet play about drunken angry hematologists) is that you have a laundry list of side effects, most of which exist in direct contradiction to each other, just like every other medication ever made (one would think there are a bunch of testers sitting around giggling over how crappy stuff can make us feel). Right now I am feeling the fatigue, and without caffeine to mask it it's making me feel like my body is just about to crumple into a little ball where I stand and I will plunge into a very long nap. Fine at home, not so great at the studio. My poor sister took a car door to the face last night and ended up with a half-inch cut on her browbone so I took over teaching her classes. Two-and-a-half hours of walking and talking and demonstrating and I couldn't breathe. Ugh. One of our moms said she'd make me signs that say "BE QUIET" that I can hold up when I get short of breath.

But the nice part is, Spring is about to spring and the weather is getting consistently not-sucky. Which means I can finally go for serious walks! When I was off the Coumadin before it was about twelve degrees outside and I had just been cut open so exercise was out of the question. Now, however, it is warm and I will work my ass off to get rid of this ridiculous belly bloat in the time that I'm off before my next d-dimer. Thanks for keeping me alive, Coumadin. But I'm not gonna miss you all that much.

MEK At some point during the week

Hey, what did you think of Inception?











Yeah.
I'll get back to you once you've got it all sorted out.

Clare Update

We've got valentines EVERYWHERE. Her neighbor comes to our studio and has already taken three bags home with her.

A little more about Clare for those of you who are interested in sending something but aren't quite sure what to get:

1. Her favorite colors are blue and purple, according to her dance teacher.
2. She's starting to lose her hair so it's headscarf time!
3. Chocolate, Twizzlers, goldfish crackers, you name it and she's probably had a snacky craving for it.
4. Cute cards, funny cards, pretty cards, we don't care as long as it's appropriate for a thirteen-year-old girl and full of positive energy, good wishes, and love.

Valentines for Clare
Dance Project
932-H Meramec Station Road
Valley Park, MO 63088.

We've got stuff from Germany, Denmark, stuff coming from England and Japan--all over the United States and all over the world. If it gets here after Valentine's Day we'll make sure she gets it. Thank you for being part of our effort.

If you want to see how she's getting on, her CaringBridge is here.

Frak!

The INR is a shiny little number that measures the ratio of blood clotting time in a patient on anticoagulation therapy to the blood clotting time of norms. In a regular human it's about 1.0 to 1.5. In us zombie types, they try for 2.5 to 3.5.

Went in for my draw yesterday and it was 1.6. NOT happy. Then I had to go get a Lovenox injection right that damn minute at the emergency room of the hospital I was in when I had the embolism, where I've been getting treated ever since. This was in the middle of class. REALLY not happy. Luckily for me the hospital is right down the road.

Off I go to the ER. The nursing supervisor is to give me the injection and once again I have good luck because he's given me injections before and he has been on anticoag so he knows exactly how miserable a person can get on this stuff. Right side's off limits, here's the scar (I think he was impressed, especially after I explained the filter thing) so let's do this.

Short needles still make me twitchy. Lovenox is an anticoag that can only be administered in the lower abdomen. It's a 140 mg dose so I only have to do this once a day, thank goodness. Shot delivered and waiting and THERE'S the burn. It's like someone lit a match under your skin. I sit and wait for the burn to subside. Can't rub it no matter how bad it hurts. And then I did something that piled on even more not happy.

I went back to class. I taught Jazz, or tried to. Mostly I just sat in the chair doubled over trying to not show how much agony I was in and how badly I wanted to throw up. Two more days of this stuff. Can't wait.

MEK Whenever

Not sure who won, but rest assured the battle was epic.

Why the new look?

Because March is coming. March is DVT Awareness Month. Burgundy is the DVT Awareness color. Never thought I'd be into that sort of thing, but then it happened. Ehnk.

We now return you to your regularly scheduled flopathon.

Case Study

One of our former students is going to school for Physical Therapy and wants to specialize in dancers. She's been hanging at the studio a lot, taking class and observing, and it's really lovely to have her back in our lives!

She informed me that one of her classes required a case study on an infectious disease/natural disorder. Would I help out if it was on clotting disorders? YES. Any chance I have to get the word out and help a friend is a good thing. So far she's had me answer a few questions and review a bit about the post-embolism experience as far as how much exercising I am able to do, all pretty straightforward stuff.

But now the big stuff happens. We've been trying to coordinate an interview over the past few days, even though Nature has had other, snowier plans. So we came to an agreement--I would record myself sharing my thoughts and feelings about my experience and put it on DVD for her to show her class. I think I'm a bit scared.

The problem is I haven't really gotten to talk to that many people about what happened to me and how it affects me emotionally, how overwhelmed I get about the whole almost-dying part of it and how sometimes I'm afraid that I've dwelled on it for too long. It's always been about my meds and how those effect me, am I tired, does my scar bother me much--the medical side of things is all I'm really able to discuss because when I'm around people I have to have the game face on. So I'm not afraid of talking about it from the patient perspective.

I am very concerned about keeping it together long enough to record this. It's so important to this girl that I share everything I can. The problem is I've got eight months worth of stuff that I haven't shared with anyone except Fahnz and I don't know what I will do if it overwhelms me. He'll be around while I record, thank goodness. I doubt I could do it alone, just like I don't think I could have survived if he wasn't in my life.

I am wearing a very meaningful t-shirt for this. I hope she notices.

MEK Tuesday

It's cold and snowy outside. Make sure you are bundled up accordingly. If possible, find someone to carry you around as demonstrated in the picture so your tender feet don't have to touch the ground.

Eh, it works for cats...

Got bored

and started a Pulmonary Embolism support forum.

Let's see what happens next.

MEK Tuesday/Wednesday

I can't decide if she's annoyed or just bored.

Valentines

Her name is Clare. She's thirteen years old and has a cancer so rare, the odds of getting it are one in three million.

Thanks to an existing and loving friendship between my sister and one of the teachers at Clare's dance studio, my sister's dance company and our studio are collecting valentines for this little fighter. We want valentines and notes and pictures and good wishes from as many places as we can get them.

Please help us out--

Valentines for Clare
Dance Project
932-H Meramec Station Road
Valley Park, MO 63088

Sing it

Far Away--live performance at the Spike VGAs.

Jose Gonzalez is my new musical addiction, as is the Red Dead Redemption OST. It's fascinating the places you can find good music. My sister did a piece to a song from Battlestar Galactica--it's beautiful and powerful and so frakking cool.

We're probably the only dance studio in the area to use a non-traditional boys' choir and music from an anime' series. I love my job.

MEK Tuesdays

To make up for a lack of posts lately, here's some pictures of kitties cuddling.

Blergh

It's winter. It's cold. It makes my scar hurt. Do not want.

I love being back at work, though. It makes being back on the Coumadin a little more tolerable--that and knowing this is only a 3-month go. The worst part about last year was not knowing when I'd be off that stuff. Now I know and I hope that this time, it sticks. If I calculate the timeline correctly, that puts me getting completely cleared around the one-year anniversary of my initial collapse. If I end up a lifer, so be it. At least now I know what to expect.

I still feel a bit lost, I guess because I was gone for so long. Thankfully I'm surrounded by people who understand how it feels. Two of my students have been invaluable in helping me talk this through because they've been through major surgery and understand how your brain can bend when it comes to the healing process.
My vascular surgeon's office called last week to let me know that everything was pretty well healed, blood was flowing as it should through the IVC. Am working up to stretching, dancing more--rebuilt my sister's website for her dance company from the ground up (thanks for the lessons, Fahnz) and beat "Scott Pilgrim: The Game" last night. Life feels almost normal.

Stuff I want to do:
A dance to "Far Away" from the Red Dead Redemption OST. That song is flawless.
Drop 20 pounds.
Sleep.

I love being alive.

MEK Tuesdays

This had better be good.

Back to it

No running marathons, no heavy lifting--but I get to go back to the studio today! YAY!!

It's really been difficult, being out of work. I've read up on post-surgical depression and it's given me a lot more clarity about why I'm so miserable. I'm unproductive, couldn't get out and go for walks or exercise properly, felt useless no matter how much housework I did. Hopefully that ends today. Plus I get to start a dance--Mum picked out some KILLER music for the recital this year and it looks like we're starting way early.

The nice part is, the day of my return is the day that the kids who were there the first time I went down are the kids I'm teaching. Seems like they're the ones who get to see me through all of this--my one-year PE anniversary is on a Tuesday this year.

Also today I am getting my blood drawn for another d-dimer, the test that determines if there is the potential for reclotting. I had an ultrasound on my stomach to see how my IVC is healing and the tech checked my leg while I was there. No new growth, which is wonderful because I've been off Coumadin for a month. Fingers crossed--I want that tattoo.

Got some insane boots for Christmas but I gotta get a bigger size. So after my blood draw I am off to *gulp* MACY'S, which hopefully won't be too bad because it's daytime. THEN I'm off to Powder Valley for a nice calm walk. Apparently after abdominal surgery of any kind your tum can be puffy for months. Do not want. Been popping antacids over the past few days and it really does help.

So here we go. I have a fresh haircut, new dye job, and a less than 5% chance of going back on meds. Life starts again today.