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Feeling Blue

October 11, 2011

Naw, not that kind of blue (though thematically, it would fit fine on this particular blog).  This kind of blue:

Yeah, all those other diseases

Everyone knows it’s Breast Cancer Awareness month.  If you didn’t, check your yogurt, the Lifetime network, Facebook, or every major newspaper in America.  Every year around this time, pink sweeps the nation.  Boobs and their ills.  They’re ubiquitous.  I don’t want to start the Disease Olympics here, but where’s the hoopla for my disease?  Where are the yogurts for Arthritis?

Seven MILLION people in the U.S. have rheumatic diseases.  Arthritis is the leading cause of disability.  Thirty percent of people with rheumatic diseases say it limits their ability to work.  In one study, patients with RA reported missing 2-3 weeks of work in a three month period because of their disease.  Helloooo, Mr. Obama, Congresspeople.  That’s people working less or out of work completely.

I don’t want to discount the importance of breast cancer awareness.  Early intervention is important in any disease, even in the case of rheumatic diseases.  Until a couple decades ago, breast cancer was a fast killer.  The efforts of the Susan G. Komen Foundation and advocates has made it survivable in many cases.  Much of that is owed to pink public education about breast health.    Also, pink donations to medical research have yielded discoveries and breakthroughs that can enable us to fight any number of different ailments.

Awareness is important.  But where are the bandwagons and clarion calls for more efforts on rheumatic diseases?  Is it because arthritis is for old people?  It’s not claiming our young?  The American College of Rheumatology says “Rheumatic diseases often strike people in the prime of life and can be crippling and life-changing.”  I was diagnosed with Juvenille Rheumatoid Arthritis at age 2.  Two.  Not 62.  I grew up explaining, “it’s not the kind your grandma has, but it does the same thing to my hands.”

And look, I get the boobies.  It’s a women’s issue, right?  Feminism!  Well, women are 2 to 3 times more likely than men to develop Rheumatoid Arthritis and 10 times more likely than men to have Lupus. Where’s the placard on that little ditty?  I look at my daughter and wonder, will she wake up to this herself one day?  (We’re not sure yet how large a factor genetics plays in these diseases, but we know it can be a factor.)

Also, it might not be how things play out on TV, but autoimmune diseases are difficult to treat: complicated, and pervasive.

It's NEVER Lupus.

We need specialists like rheumatologists (which is not even in WordPress’ lexicon) and whatever specialists they send us to for other related problems or problems our crazy medications cause/leave us vulnerable to, like ulcers, infections or TB.  Because arthritis doesn’t just pick an organ.  It goes for systems.  Check out Arthritis Does That?

But cancer.  Ugh.  It takes such a fight.  Well, you can stave off arthritis flares, but you can’t “shrink” the disease.  You can “manage” it, but you can’t eradicate it.  You have to live with it or under it.   There’s chemo.  Guess what?  Arthritis patients also experience chemo, in the form of Methotrexate, which this website warns one should “only take…to treat life-threatening cancer…” while acknowledging its benefits for and use in arthritis patients.  And we get courses of IV medications, too.  Expensive infusions that sometimes aren’t covered by insurance.

I’m being snarky, I know.  It’s not because I want to take something away from breast cancer patients, victims and survivors.  Breast cancer has hit close to home many, many times.  And it’s not the only disease that has groundswell support (though it may be the first disease to benefit from the sale of bags of sweet onions).   But I want arthritis to have its day. It’s due.

Recently I went to Capitol Hill with the American College of Rheumatology.

Arthritics and docs walking for miles on a rainy day (natch).

We had folks in wheelchairs, walking with canes, children, adults, me in orthopedic shoes fit for hard miles of tile.  We got the “yeah yeah, disease” nods from Legislative Assistants and Health Policy wonks who have met with every ailment advocate who ever wheeled or walked into their offices.  We heard about “hands tied” and supercommittees.

We were given the “straight story” by my own Virginia senator’s office as the Health LA dazzled us with her nonchalance and policy palaver about how Mr. Warner says “everything’s on the table” for cuts.  I caught her eye and told her I understood that she hears from all the people wanting all the dollars for all the things and every Member of Congress has their pet disease advocacy.  I know  there is no good choice between cancer and arthritis, sclerosis and heart disease.  I know this, but there are people who have a hard time physically getting up in the morning.  They may have to call in.  Someone else will have to make the baby her bottle and change her diaper because the only outfits clean are the ones with the snaps.

Others put on their orthopedic shoes and wait for a cab or take a chance their hands are having a good day and wheel themselves all the way around the Rayburn House office building to the side with the ramp.  They take a day off work or leave families and fly across the country to make their case in 7 1/2 minutes to a 24 year-old who couldn’t put down her Blackberry because she’s just. that. important.

We don’t want a 2 billion dollar bailout.  We don’t want cancer to take the hit.  We just want you to know we hurt and we need your help.  And, by the way, so do you in ten or twenty years.  So does your grandma.

We may have made an impression with her and her team.  Maybe not.  But tomorrow, on World Arthritis Day, I’ll break out the blue in the sea of pink.  And in an uncharacteristic move,  instead of my usual schtick bemoaning the challenges it brings to my life and the life of my family, I’ll dedicate one blog post to kickin’ Arthritis’ ass with my good foot.

Catching up: a whole season in one post

October 6, 2011

This summer was full of misadventures.  Honestly, it was overwhelming at times and seeing it written in the way it is below, it looks pretty terrifying.  But in all things, there was tremendous grace.  Peace passing understanding.  And did we need it!

Ever wonder what those cars atop tow trucks see?

In August, our van broke down near Roanoke, Virginia as we were coming home from a serial dramatic family life situation that went something like this:

-Beloved aunt’s funeral
-Spontaneous “our 3 year-old has never seen the ocean!!!” family vacation to the beach
-Another beloved aunt hospitalized, her developmentally disabled adult son moves in with my parents
-Return trip home from beach diverted to my panicked, grieving parents’ house
-Week of legal and medical drama
-Rare east coast earthquake at our house while we were away
-Race to beat hurricane Irene to our house (hurricane FTW)
-Family van breaks down, our whole family rides in said van atop a flat bed tow truck (PS-a stomach bug hits me while we look for rental car, Subway lunch rejected)
-Family returns home and both children (3 and 5) begin their first week of school [which in itself is a tale I’ll save for later] while husband becomes acquainted with every possible bus route within a 15-mile radius of our house.
-And oh yeah, we had a flood.

This is one of many reasons I have Jesus on speed dial

We got the van safely home and we started the school year on a good, albeit  frantic, foot.  Henry started Kindergarten in a Spanish immersion program so the first half of his day (math, science and special classes-Art, Music, PE and the like) is conducted entirely en Español.  He’s having fun and taking the bus.  You think you’re familiar and comfortable with school buses until one day you have to put your first-born child on it and let it take him to God knows where.  It took about a week of dropping him off and picking him up at school before I gave in on the bus riding thing, but Henry was so determined and, let’s face it, in his mind it is probably the coolest thing about school so far.

Ellie started preschool with much less hurrah’s than Henry got his first day.  Oh, the burden of the second child.  But she loves it, too.  Unlike her brother who is already reporting that “nothing” happened at school today, Ellie has full reports including details about the snack menu for the day.  She is full of songs these days and, like her brother, now hears everything we say (especially the things we don’t want her to).

It’s been a season of change for our whole family.  My mom’s still learning to live without any sisters.  We sent her some “wings” Henry got at church to give to someone who has bravely persevered despite hard circumstances.  She was honored.  Now the school year has started, we’re settling into a routine.  Kids in bed by 8.  Parents up by 6:30.

This is the phase of life I remember my parents living.  I’ve never been much of a coffee drinker, but it has become a staple at our house.  Guess I’m officially a grown-up.

Progress (with the help of motorized consumer transportation)

May 18, 2011

Triumph!  Yesterday AND today I took a shower standing up!  And I went down the stairs yesterday without crutches!  And this past weekend my foot hurt and I STILL made preserves anyway!

Before

After

It’s still intermittently painful to walk.  We ventured out to Target yesterday and they didn’t have any of those motorized carts available when we got there.  They really should have more of those available.  Half the time, the carts are so low on battery they poop out about halfway into the store.  But I digress.

Rather than walk back to the car, I hobbled over to the greeting card section to pick up some cards for my brother while Dave went around the store hoping to get some of the shopping done.  About three minutes after he left, as I was wading through the “brother” cards (many of which had large cartoons of men with their pants hanging off their butts), my foot decided it no longer wanted to participate in this outing.  I tried standing one-legged, since I’ve gotten pretty good at that over the last two months, but that also gets old after a few minutes.  I’m no yogi.  Thankfully, Target’s modern, yet industrial decor was available to serve me, so I stood on one foot, hanging onto a long vertical divider in the middle of the card rack.  A woman pushed her cart by me but she was too busy looking at something on the other side to notice me, dangling like a chimp holding a card with sailboats on it (why do sailboats=masculinity, American Greetings?  I’ll never understand this industry).

Dave came back and handed me his phone.  My mother was on the line.  I tried to give him a non-verbal “Don’t you see me hanging here? I can’t talk on the PHONE!” look, but he was preoccupied trying to keep the kids from standing up in the cart and pulling down cards by the handful.  We truly are a barrel of monkeys.  I talked to her briefly, but she could tell by my inability to finish a sentence that I was busy, so she let me go.  I scowled at Dave and told him I saw a woman driving a motorcart into a checkout lane and he should go stalk her until she gets out of it.  He dutifully went off in search and I stayed with the kids, clinging to the cart for dear life while my foot screamed for help.

“Watch, the battery will be dead,” I thought to myself (I may have said it out loud to the kids, even.  At this point, the thin and unreliable filter I usually have for verbal communication was completely gone.)  But then, a small wave of hope came as I saw Dave driving toward me in the procured motorcart.  Even then, I kept waiting for the battery to die, envisioning Dave’s smile melting away as the cart slowed to a stop with a cartoon meee-eewwww, WA-wah. (What’s wrong with me?  I’m like the pessimistic version of Ally McBeal.)

He made it safely to the greeting cards and I hopped in, and the battery light was as bright as could be.  We finished our shopping, made it through a brief Henry fit and came home.  And I went up the stairs without my crutches.  I even participated a little in putting the kids to bed.  Slowly and with some pains, things are returning to [ab]normal for us.

Feet don’t fail me now

May 9, 2011

Last week I had a cast.

Arguably, the best cast ever

On Friday, Trogdor was sawed off my leg (a strange and daredevil experience, if you’ve never undertaken it).  In exchange, I was given a flat velcro shoe.

Arguably, the crappiest shoe ever

Then I went to a tea party at Henry’s school, where there was no tea. Once we were seated and finished with the “oh, you’re so-and-so’s mom,” small children paraded in, bestowing handmade necklaces upon their proud mothers.

Henry's aesthetic called for less beads (read: he lacks the interest to fully bead a necklace.)

The kids went all out.  They set the tables and made decorations for us.  I got a laminated placemat adorned with Henry’s handprints accompanied by a poem his teacher probably found on the internets.  (WordPress is not fond of compound words and is underlining both “placemat” and “handprints.”  Wow.  It just underlined “WordPress,” too.  Fail.)  Henry and his classmates sang us several songs and then banged out on handbells for two little numbers before presenting us with a feast of snack foods.  (C’mon, WordPress.  Handbells?  Get thee to a Methodist church.)

I could eat him up. The plate looks good, too.

I managed to get 1 of the 5 Hershey Kisses on the plate before Henry could open and scarf it down.  My boy can handle himself when it comes to chocolate.

Henry will finish preschool in two weeks.  Then begins his last summer before starting elementary school.  Meanwhile, I’m still sitting in a recliner in our bedroom, disappointed that recovery is going to take much longer than I anticipated.  I had visions of us taking an sunny May trip to our favorite pick-your-own fruit farm and making strawberry preserves for his teachers. I can rock some preserves.  But right now, I’m lucky if I can truffle-shuffle myself to the bathroom and back to my chair.

I imagined handing those sweet ladies a bag of goodies out of the window when I dropped Henry off for the last time.    Instead, I’ll probably be emailing the lady coordinating a grand gift card distribution for the teachers and letting her know I’ll be sending in a $15 check.  Still, I’ve got two whole weeks to bang out a thank you note that will make ’em cry.

So much of my mothering is done this way, with big plans and small wins.  I just hope my foot ordeal gets less ordeal-y soon.  This family could really use a fantastic summer.

Love and Other Drugs

April 18, 2011

Since my Friday Night Lights marathon ended last week, and because my respite must continue for 3 more weeks, I’m currently subsisting on work and whatever entertainment my Netflix 3-at-a-time plan can provide.  I’m not good at keeping my queue updated, and I treat it like a bucket list of sorts: movies I should see before I die.  So sometimes, if I’m not watching, I get random deliveries like The Duchess or Teddy Roosevelt: American Lion, disc 1.  Now that I’m convalescing, I’m paying more attention and trying to pick one movie I really want to see (I would have seen in theaters), one I consider Redbox-worthy ($1), and one documentary or something heavier that I have to woman-up to watch.

So my Redbox movie this weekend was Love and Other Drugs.

Consider this your spoiler alert.  I’d read about the movie and I think I saw some situation on F/X with Jake Gyllenhaal and Anne Hathaway “hosting”  during commercial breaks.  And this is what I knew about the film going into it:

  1. This is Anne Hathaway’s big NAKED movie.  I think she’s done nudity before, but this was the full monty and she was “so brave” for generously sharing her slender white form with the world.  A true triumph for women.  I’m really surprised there was no Oscar nod for the role.  Everyone knows that the criteria for Best Actress nomination includes a) being under 30 and getting naked for a role, b) being under 30 and having a major crying outburst in a film, c) being over 50 and having a major crying outburst in a film, d) playing Queen Elizabeth and showing no emotion for 118 minutes because you’re the man-queen.
  2. Jake and Anne really got along during the shoot.  Yay.  Who couldn’t get along with these two?
  3. The plot involves a gigolo and a really messed up girl whose messed-upness transforms him into a monogamist/savior. *blot eyes*
  4. Jake Gyllenhaal’s eyebrows probably have a credit in the film.

Basically, I knew what I was getting with this film before I even clicked “play” (’cause I watched it on my computer).  And let me just say, number one in that list was ridiculously true.  I’m not a prude about nudity in a movie (though I prefer not to be watching people have sex constantly.  Sprinkle in a little conflict or dialogue somewhere please).  I think Anne Hathaway was naked for 83% of the movie.  Also, Anne Hathaway having loud sex accounted for two-thirds of that percentage.  The rest of it was her laying there talking to Jake.  And isn’t that what everyone does?  Lay around naked and talking to a person we just met?  All that undress was necessary for her character, you know.  I learned so much, like how her character is a total nudist/nymphomaniac.

The main plot of the story is that Hathaway’s character suffers from early onset Parkinson’s disease.  She meets gigolo drug salesman Jake and he is enraptured and the challenge becomes will they stay together given her impending health decline.  The last 20 minutes of the movie were the most worthwhile, and I had to wade through over an hour of hay-romping and Viagra jokes to get there.  At the end, Hathaway has to decide if she trusts Gyllenhaal enough to lean on him and Gyllenhaal has to decide if he’s man enough to handle commitment.

This is a compelling conflict for me, personally, having had the “but I’m sick and therefore not worth the trouble” conversation myself on several occasions.  But the main conflict was treated superficially.  It was simply an overlay to the typical bachelor-turned-committed guy plot.  Hathaway’s disease was in the early stages, so any talk of her fading health was largely hypothetical at that point.  Both characters knew what was coming, but they had experienced very little of the real difficulty.

A more interesting story could have been told had the filmmakers begun with the nascence of the illness and relationship and followed the couple through some of the trials of their young life together.  The stakes could have been higher: she could have been sicker or they could have been married.  There are glimpses of these concepts in a scene where Gyllenhaal attends a meeting of advocates who have Parkinson’s.  Hathaway is ecstatic, learning that people with Parkinson’s can marry, have children, struggle and maintain their humanity, dignity and humor throughout their lives.  Yet Gyllenhaal’s character gets a different view.  He meets a husband who “loves his wife,” but if given the chance, would have chosen not to be with her because of her illness (aka: total winner).  So the storytellers have set the bar pretty low for Jake: he has to be better than THAT guy.

This movie aggravated me on several levels (remember all the naked?), but I was most disappointed by the plot.  Maybe it’s because I know how hard it is to trust people when society basically tells you that you’re not worthy.  It could be that I know what it means to have someone tell you, “I’m so sorry” about your illness when really they mean, “dang, I’m glad that’s not my life.”  Or, because I’ve been the one who “has it worse” in some example meant to inspire a person having a hard time.  Maybe it’s because I have an amazing husband who shares with me the sense of injustice and the despair of chronic illness because he has to “take on more than most husbands/fathers.”  Or it could be that we’ve dealt with family and friends who warned us against this relationship and had “concerns” about whether or not we had what it takes to stay together or build a family (“Can she have babies?”).  Maybe it’s because Dave and I have had these breaking point talks: during which I’ve felt simultaneously guilty for imposing on him and outraged that he would ever have a complaint about any of it because I’M THE ONE WITH THE THING.

It’s a hard thing to be the sick person.  It’s a hard thing to love the sick person.  The only thing hard in this movie were the scores of men grasping for Gyllenhaal’s sample boxes. (see, I can make a Viagra joke, too.)  I’m not trying to get on my high horse, here.  I’m sure the makers of this film tried to get this right, but I wish it had been done differently.  I felt like it was more important to get Anne Hathaway to take her shirt (and pants and undergarments) off than it was to tell this kind of story.  As it stands, I’m not sure it was worth my time, much less the attention I gave it here.  And I’m pretty darn sure it wouldn’t have been worth that Redbox dollar.

What I Did on My [Foot-Broken] Vacation

April 12, 2011

I’d do a big “I’ve been away from the blog so long” thing, but it’s become a recurring theme around here, so skip it. This spring, like last spring, and the spring before, has been full of super-fun medical drama.

A few weeks ago (2.5 to be precise), I underwent a bunionectomy.  Now, I know what you’re going to say, “Hey, my grandma had that.”  That’s right, I have positively geriatric ailments.  Staving off the gout as we speak. (not really, but who knows what glorious granny disease the future holds!)  For six weeks, my right foot will remain in a non-weight-bearing cast (I think I’m breaking a hyphen law there).

And before I got all enshrouded in fiberglass strips I thought,  “maybe this will be like a little vacation.  People bringing me stuff.  Not having to do errands like going to the store or taking books back to the library.”  Pathetic, maybe, to those of you who have real vacations.  But since having children our “vacations” are usually 2-night jaunts tied to some business trip where our hotel stay and food budget is covered by a corporation and a generous $60/day per diem.  We managed to squeeze a trip to Harry Potter World in Florida back in February, so that was a win.  Thanks, government contracts!

So anyway, I’ve been sitting here so far (2.5 weeks and some minutes) keeping myself very busy.  And here’s what I’ve been up to:

  1. Establishing a firm addiction/loyalty to Friday Night Lights.  I’m about to see the final episodes, and then I’ll get to work on making Dave a convert so I can watch every episode over again!

    Clear eyes, full hearts, can't lose <= poetry

  2. Drinking lots of Coca-Cola, sweet tea, and eating as many forms of chocolate as possible.  All of these are [not] recommended for bone growth and restoration.
  3. Calling my children to me like some Victorian mother, “Send in the children.  [They show me their completed projects, choreography, what-have-you and then precariously and haphazardly endanger the healing foot.] Take them away, anon.”
  4. Balancing my children (see #3) on the arm of the recliner Dave moved into our bedroom so I’d have a place to be and a clear path to the bathroom (see #2).
  5. Writing and editing the next issue of our magazine for work.  It’s gonna be awesome, if it doesn’t kill me first.
  6. Reading BossyPants.  Highly recommend.  Then again, it was written by my TV BFF, so I’m biased.

    One day, Tina, we'll be together. One day.

  7. Perfecting this move:

    Only in my version, it involves me dangling from crutches with my cast in the air as I'm about to fall on my butt

  8. Dog-earing recipes in of Southern Living that I will totally cook one day when I make it back downstairs to the kitchen.  And can stand up.
  9. Facebook.
  10. Trying to time Netflix deliveries on my 3-at-a-time plan so none of my Gilmore Girls deliveries fall on a Sunday (and they always do).
  11. Getting morally outraged at things on the internets.

    A newspaper found at my friend Ashleigh's tumblr

  12. Getting excited about other brilliant things on the internets and wishing I was still an English teacher because I would have scrapped today’s lesson and just let my students bask in the genius of Mark Twain while I went on a tirade about how no one writes real letters anymore and then assigned them to write a contemplative letter to a friend only to be disappointed that most of their letters included LOL or a hand-drawn emoticon or <3.
  13. Eaten yummy meals delivered by people I barely know who go to my church.
  14. Learned what our dog Emma does all day when we’re not looking and crossed off ever writing a book about my dog.Aaaand…
  15. Discovered Moira Kelly is still acting (PTL); but, tragically, it’s on SoapNet reruns of One Tree Hill.  How far the mighty have fallen.

    THEN

    NOW

And this is why teenage me used to rip pages out of my diary…

November 16, 2010

So lately I’ve been thinking about a lot of things, but they aren’t making it onto paper (or internets, in this case).  I know it’s a typical excuse to say I’ve been busy, life and mothering and all that.  But it’s true.  It’s a lot keeping curious fingers out of sockets and vacuuming Parmesan cheese out of the carpet.

We’re considering fostering children.  That subject has been pretty bounced around within the walls of our house, so any post on that subject will have to be forthcoming.  Needless to say it seems exciting and terrifying and fraught with potential for glory and disappointment.

My boss told me yesterday I should write a book.  I may take her up on it, but that’s one of those ambitious things that I tell people I’m going to do (like going back to school for a PhD) and never follow through on, so I’ll make no declarations here.  I’m wondering if I should even attempt such a project given that I can’t keep up with a blog or two (or three) and even my Google Reader is sorely neglected.

I realize this post is very Eeyore-pitiful of me, but I’m in this weird place of preparing for some kind of transition (expected ones like Henry starting school next year or ones that remain to be seen, usually in the form of medical maladies, but I’m open to breaking that trend).  And while we prepare, there’s a lot of waiting and being to be done.  What is it John Lennon sang? Life is what happens to you while you’re busy making other plans.

So that’s our happening lately.  Life.  I might write more about it, but probably not.  Hope to see y’all again soon.

“Good morning, Pooh Bear,” said Eeyore gloomily. “If it is a good morning,” he said. “Which I doubt,” said he.

“Why, what’s the matter?”

“Nothing, Pooh Bear, nothing. We can’t all, and some of us don’t. That’s all there is to it.”

“Can’t all what?” said Pooh, rubbing his nose.

“Gaiety. Song-and-dance. Here we go round the mulberry bush.”

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