there's a name for it

Despite past attempts to google "unilateral edema," I only now have the name of a fairly rare syndrome that has been bothering me for a decade:  May-Thurner Syndrome.  This latest epiphany comes after paying a vascular specialist $35 to take a 2-second look at my leg and call up her colleague on her snazzy iPhone 4.

Now I have thought previously that I had the definitive answers and treatment would commence, but those were false idols, apparently.  I guess the tendonosis (yes it's a word despite Google Chrome's protests), and lymphedema are only part of the story.

So to explain it briefly, my left iliac vein (vena cava...vein coming up from my left leg) has been compressed by my naughty little artery that passes over it and slightly to the left.  The vein walls narrow, blood flows less freely and swelling ensues.  There you have it.

Treatment is up for discussion, considering I have been told that I'm too young for the invasive stuff (with a hint of "with all the old people out there suffering from fatal conditions, why are you complaining?"), and I really don't know the full consequences just yet.  What my reading thus far has taught me is that I am just the right age and gender to be afflicted with such a syndrome.  It presents predominantly in women in their teens to twenties, and is possibly congenital.  So take that, old people, you aren't the only ones with problems!

Now the next step is to decide how vocal I want to be about all this.  Do I tell my whole family, considering the risk of clotting?  Do I risk them not taking it seriously enough, or worse, freaking out like a bunch of Chicken Littles?  Just when do I get to make my sister feel guilty for calling this actual affliction my "fat foot"?

I do feel mismanaged by all the doctors I've ever seen.  Except Dr. Daou (so far...).  I tried to express this to the specialist, and her response was, "Well, no one ever gave this diagnosis because they aren't specialists."  That besides the point.  What I want to know is why no doctor has ever sent me to her before.  Ten years.  Really?!  Everything I'm reading now states that at the top of the differential for unilateral (one-sided) swelling is DVT, deep vein thrombosis (clots).  And right below that...May-Thurner!  So let's break it down:  back when the swelling first presented, no one took me to the doctor.  First betrayal of a child's trust in her grown-ups.  Then when I take matters into my own hands, the doctor scans my ankle but does not check for clots. Not until 2010 is an ultrasound of both legs performed that rules out clotting.  But no one took that next step. Blame it on a succession of substitute doctors (Daou was out of town) but either way...they are supposed to do their jobs.  Now, finally, I have an actual diagnosis.

So, what's stopping me from believing that doctors don't bother reading new papers and journals to update their differentials and help the people who trust them?  Seems to me healthcare "reform" could go a lot further.

But don't forget, no matter how young you are, be your own advocate!  I had my parents and doctors etc. yelling and griping and throwing up their hands in frustration, but I've got my diagnosis now.  Healthcare is for everyone, not just the older generations who for the most part have been irresponsible with their own bodies (Dad, for one, has never sought treatment for his tinnitus and continues to work with heavy machinery).  No young girl should ever feel like I used to feel.

regret

I always feel the need to repeat to myself a list of facts that prove I once lived a purposeful life in New York.

1.  Yoga with Anastasia (Anna-sta-See-a).  Just now a Radiohead song was playing that reminded me of her unorthodox playlists..."Motion Picture Soundtrack" from Kid A.  I'll just skip over the part about a classmate blatantly running away from me when I turned to say hi at the end of a session.

2.  Rehabilitation for my broken foot.  While cleaning up a pile of old papers I found the guidelines for exercises as well as receipts for sessions.  Not far from the Mandarin where the Twilight guy said he stayed while in town.

3...I can only think of two right now.  But they prove I once had a very different life.

bookshelf

Lately I’ve been reading some old books from the old bookshelf.  Now, part of me knows this is yet another distraction from the real task at hand…and yes, it is definitely escapism.  But it is an escape to a simpler time, when I was ten years old and cared about nothing but spelling tests and art projects.

I wrote about my bookshelf for a scholarship application my senior year.  I don’t remember the prompt, but my point was how books, no matter how childish, stick with you.  You can scan your bookshelf to remind yourself of who you are, what you do and what you want.  Of course, it can also go the other way…you can buy books of a certain style or genre, and, whether you actually read them or not, project a false sense of who you are for friends and acquaintances all for the purpose of esteem.  Not many people have seen my bookshelf, so I’d like to think it is more honest than that.

Really, I should say “book shelves,” because my collection has spilled over with additions from architecture, art, and history.

So I’m re-reading The Dark is Rising sequence by Susan Cooper, an old favorite that weaves together Celtic and English mythology into a little twentieth century saga.  It gives extra pleasure now, since I can read them much more quickly and get to the good parts.  A short cut to that feeling of accomplishment when you reach the end of a book.  A feeling I haven’t felt lately, except when clearing the sink of dirty dishes or something else mundane.

education

I have yet to watch the documentary Waiting for Superman—and I might not even watch it—but I’m already filled with dread and disappointment about America’s academic standing.  All from the news coverage the movie is getting.  Especially that clip that talks about American kids being the most confident, even while they are in the lower percentiles in math and science.  Yikes.  One thing I haven’t heard from any commentators, however, is any self-reflection.  We are all products of this American educational system, aren’t we?  Shouldn’t we be asking ourselves, am I as unprepared and under-educated as these children are?

I also have to wonder, am I as overly confident as they are?  I’m not sure how to describe the mindset that comes about from years of straight As and academic praise.  Confident doesn’t quite describe me back at the turn of the century.  And it certainly doesn’t describe me now.

Also reflecting on my experiences as a substitute teacher in public schools, and my observation of nieces, I get the sense that too much attention is paid to teachers.  They have to do better.  We have to reward the good ones and get rid of the bad ones.  And so on, and so forth.  Maybe so…but what about the parents?  The American confidence comes not only from schools rewarding mediocrity, but also from parents who believe that their children can do no wrong, and raise their children accordingly.  If anything is wrong, it must be the other kids, or the teacher, or the other parents. 

This all brings up another issue of my irrational fear of teachers, which I should write about later.

I know that Big Bird sang “Everybody makes mistakes,” but he didn’t sing “You’re so good you don’t have to try.”  Too much focus is put on raising future professional athletes and American Idols and beauty queens these days.  Like parenting is this gamble, where the winning hand is some innate talent that will set your child (and you) up for life.  Yes, that’s a generalization, but I’d like to see more fostering of creativity and ingenuity, both things that can help in those fields of math and science that are giving Americans so much trouble. 

Where are the Ms. Shearers of this world who taught me to “roll with the punches”?  I could use her now, because I’ve been punching myself for an entire year without any rolling.  Despite my public schooling, I can do better.  I should do better.

class warfare

I'm sick of rich people complaining.  And if that is a prejudicial statement (which it most definitely is...), then I'm not sorry.  Every newsanchor and pundit out there screaming about class warfare is doing so merely because they belong to the Haves, not the Have Nots, and want to remain in that category.

Of course these categories are not so easy to define.  In terms of having a roof over my head and transportation and food and clothing, I am a Have.  In terms of a career and investments and retirement, I am certainly a Have Not.  I've been feeling more and more like a Have Not lately in political and social terms.

Family is that network in which Have versus Have Not should not matter.  Or so I believed, naïvely.  Last summer, a portion of my family went on a beach vacation.  Those who did not go had various reasons for sticking around Ohio.  A newborn baby, farm work, and lack of funds.  Guess what my reason was.  While I did  not care very much about the first time, I am changing my mind now.  Namely because of something my sister said.  She announced that it was time to plan the next "family" beach vacation, on some island off the coast of North Carolina, in a house with too many amenities.  She estimated $1000 per couple.  First...we aren't all couples.  Second...who the hell can afford $1000 for a week at the beach?!  I told her that I can't really afford that.  What could I afford, she asked.  Well, honestly...nothing.  Everything I earn goes toward health insurance and loan payments.  And I'm not earning much these days as a substitute teacher.  Here's her response:

"Then you aren't coming."

Wow.  Talk about familial love.  Not.  I've been trying to figure out her inexplicable transition from lower middle class farm girl to uppity bitch for many years now.  I've got no explanation.

Here's what I want to know...why did the rest of the family not rebuke her?!  #1, we're still in a recession, no matter what economists say.  #2, we aren't a rich family, so why are they acting like they deserve to spend a week lying on cushions while slaves feed them grapes? #3, is it still a "family" vacation when one family member is so unceremoniously prohibited from attending?  One disclaimer:  my dad did say he could pay part of my way.  But that doesn't really help.  Why?  Because I want to be independent.  I don't think he realizes that.

I don't think any of them realize how badly I want to be independent.  I want my own home, my own car, my own salary.  I want all that investment and 401k crap.  But I cannot seem to get started in this "job market" or lack thereof.  I don't think any of them realize what I gave up when I moved back to the farm.  I had Manhattan.  I'm starting to think I'd be better off impoverished in the Big Apple than on my family's dole.  At least I'd be independent and free from that sister's selfishness.

So now I'm faced with a decision.  Do I go on vacation, or not?  Now I don't want to create the illusion that I don't pay for anything at all entertaining or self-indulgent.  I have plans to go to the rally in DC with my man, I've bought "interview" clothes (...I guess I was overly optimistic that day), and today I bought ice cream and Chipotle.  But do I want to be trapped on an island with people who don't really understand me?  Who apparently don't even care about me and my situation?  You'd think that they'd have some modicum of empathy at least on a very basic, biological level.  Nope.  As I right and drum up the rage that I felt Saturday night, I'm thinking I already made my decision.  If Rachel can boycott Chipotle and McDonald's for ideological reasons, than I can boycott the self-entitled "family" vacation that has brought class warfare into the confines of my familial relationships (that are, I believed, supposed to be safe and comforting, not critical and damning).  I cannot in good conscience spend hundreds of dollars to go to the beach with people who drive luxury vehicles and whine about their retirements while there are people starving...starving for work, food, and financial independence.

I may vote for a Republican or two on the local level.  That's just how it goes in Ohio.  And this is not to say that Democrats are not Haves...they most certainly are...but they seem to care, even with all the economic troubles, about the Have Nots more than Republicans ever could.  That's why I get a sick, twisting feeling in my stomach when I hear and read "class warfare," "regular folks," "entrepreneurs," and all the other conservative (and upper class white) spoutings these days.

I am a Have Not, and though I may not always be one, I'll never forget how it feels to search for understanding from the ones who are biologically inclined to provide it, and come up with nothing.

stirring up dust

While clearing the old book shelves for my latest painting project, I had to stuff a lot of books in a box and gently place glass trinkets aside.  I also happened across two journals of mine, my travel journal and my diary.  Reading my travel journal reminded me of how optimistic I was, that I would one day fill it with adventures all over the globe.  Reading my diary brought up the old debate about what should go on the blog and what should stay private.  I think I've drawn a good solid line between the two...

I was thinking the other day about how I might categorize my blog.  Now, I have no delusions of grandeur that some day thousands of readers will check my blog for my latest wisdom.  But it was an interesting thought nonetheless.  I often write about jobs these days, since it weighs so heavily on me.  Occasionally some politics, though I think the market for political bloggers (whether liberal or conservative) is rather overcrowded.  Maybe I should write more explicitly about art, since I'm supposedly well-educated on the subject.  I share other little tidbits that might be little mini-echoes of that Julie & Julia movie, when I chronicle the trials and tribulations of Grandma's pickle recipe or using a sewing machine for the first time in fifteen years.

But really, all the little projects around the house--painting, cleaning, baking--all are distractions from my real work...that stupid thesis that haunts the quiet hours before I fall asleep.  I really did bite off more than I could chew.  Was a fabulous two years in Manhattan with fabulous people worth this blunder?  It always comes back to that.

last week or thereabouts

I’m sitting in my 90 year old grandmother’s living room tonight, watching and waiting for any sign she’s having trouble walking or otherwise getting around.  It’s not out of the ordinary for someone her age to be achy, or to require a walker, yet we’re all wondering what tomorrow’s tests and scans will reveal.  Her pain medication might make her more unsteady than usual; therefore I am having this impromptu sleepover.

Now the young and restless voice in my head is telling me I am too young for these worries and responsibilities, yet who else can do it?  In the other house there is a 6 month old, and Dad isn’t much of a nurse.  But still, here I am, highly educated and desperately wanting to see the world, and I’m stuck in a living room.  Naturally my thoughts drift to my mother, whose expertise would be most welcome in a time such as this.  It still grates on me that the loss of my mother requires further loss, in terms of sacrifice.  A heightened sense of responsibility toward my family, and thus the surrender (or just postponement, I hope) of global dreams.

The closest we have to a medical expert in the family now is a veterinarian…not that her presence isn’t of any comfort, but Mom’s quiet authority was quite a luxury, looking back on it.  Prescriptions and scans and exams were not so incoherent.  Prognosis was not so scary.  And with just a few words she could put to rest the inevitable negativity and fear that Dad has running through his head right now.  While my sister and I are thinking short term:  monitor Grandma’s reaction to the pain medication and get her ready for her CT in the morning; Dad is leaping ahead:  power of attorney and hospital stays and dampened spirits at the upcoming birthday celebration.

The quiet right now, punctuated by my grandmother’s big clock and the shuffling of pages of her book, is rather disquieting.  I’m not exactly sure how worried to be.  It’s been a while since I have been this close to the medical goings on of a family member.  With Mom, it was brutally sudden, and with Grandpa, it was quiet and expected.  Not since Grandma Elliott have I had to play prescription courier or anything like that.  That was seven years ago.

I was just thinking the other day, how it feels that I’ve accomplished so little in this decade.  With only a few months remaining…will I make up for it?