Love & Other Drugs

Once in a while in popular culture we come across something that resonates within us. It can be a song, a movie, or some kind of reference online. Especially in this digital, everything-is-immediately-available age. The most recent experience I've had with this is watching the movie Love and Other Drugs. It's a good movie and I highly recommend it even if you're not on the chronic illness carousel, but especially if you are.

 

It's a story about a 26 year old with early onset Parkinson's. But it wasn't so much that the story involved a particular illness as it was just about *every* chronic illness, most of which are almost invisible. It's about living inside a body that is failing you and refusing to cooperate with anything you want on a daily basis.

The one scene in the movie that truly spoke to me and inspired this blog was about 3/4 of the way through the movie. Jake's character (Jaime) comes over to his girlfriend's apartment after a day at work. Anne's character (Maggie) has had a really long, crappy day dealing with doctors and trying to get to the pharmacy before it closes to get her meds...basically, she spends forever at the doc's and misses the pharmacy and has to wait until tomorrow to get her meds which means that she's without any meds until she can get to the pharmacy. A story that all of us that deal with way too many doctors and pharmacies and medications know all too well.

So, she's got a bottle of vodka trying to numb a little of the pain and frustration of it all. And after such a crappy day, she's prickly and short tempered and pissed off at her hands because they won't work right, and ....basically the whole damn lot of it all.

I don't have Parkinson's but I do know what it's like to live in a body that is betraying you.  I do know what it's like to drop things and knock them over all the time.

So Jaime and Maggie start arguing and she tells him to him the hell out. As he's leaving, she tries to pick up her glass and ends up knocking it off the table. Just as Jaime steps out the door, he hears this howl of grief and frustration. He steps back in the door and finds her crumbled on the floor, sobbing. He gathers her up and holds her. This is supposed to be the point in the movie that we understand that he's seeing how hard it is to love someone with a chronic illness and in the face of all that, he still chooses her because he loves her.

Part of the story deals with how Maggie doesn't let anyone too close because she doesn't trust anyone to accept her illness and support her through it. It's incredibly difficult to be with someone that is chronically ill. The fact that something like 80% of spouses leave their significant other in the face of cancer, Lupus, Fibro, or a whole list of chronic illness speaks to how hard it really is. And even in the 20% or so of those that don't pack their bags and run off to Aruba with a hot blond, not all of them are really there. (Okay I'm speculating...a little ... about the blond...and Aruba, but you get the idea...they look at what the future holds for  their chronically ill S.O. and bail.)

That moment...the resonating howl of anguish, grief, and frustration...spoke to me. The cry of overwhelming heartbreak as she collapses to the floor in sobs. We've all been there. Chronically ill or not, something, sometime in your life has left you feeling disheartened and overwhelmed.

She tries to push him away because the thought of trusting someone to catch her as she struggles is terrifying.

 

That's one of the lesser known things about being diagnosed and eventually learning how to live with an illness. The fear that no one will be there with you, that being sick makes you feel harder to love. We've all lost people once we became sick...friends, family, loved ones, and yes...sometimes spouses.

That was the part of the movie that resonated in me. I've covered a lot of aspects of living with an illness but the fear and rejection is never truly addressed enough, in my opinion.

If you love someone that is chronically ill, try to understand that they are still in there. The same person you knew a decade ago is still trapped in that betraying body.
If you are chronically ill, I hope you'll share this blog, or better yet, that movie with your S.O.

I think the most important thing we can do is try to understand each other. 

Life with Fibro...day five thousand and something

It's not very often that I stop and feel sorry for myself. I'm typically the kind of person that rolls with the punches and I've gotten really good at picking myself up, dusting myself off, and moving forward after landing on my ass a few times (and occasionally pretty hard).

But this week has been one of the those weeks that makes you pause, look at the ceiling and think to oneself "all right...dammit. WHAT the hell?!". A person can only take so much in any given period of time, and maybe it's natural for us to stop and look around once in a while and take stock.

Especially if it happens to be in the middle of the stairs as you're sitting on your ass because you fell again.

I fell down the stairs in November. November 19th to be exact. The day my son left for boot camp and five years to the day after my hip replacement surgery. (That was its own 'what the HELL' moment...but whatever.) Turns out I tore 2 ligaments in my foot when I fell so I am currently sporting an oh-so-fashionable sexy boot brace from the knee down for the next 3-5 weeks because it hasn't healed right yet.

Then I fell again a few days ago. Not down the stairs this time, just on the stairs. I wasn't hurt...well, nothing but my pride anyway. But I just sat there and started crying. I used to be a dancer and a runner. I took really good care of myself and I have always been in really good shape. So this....this new existence...is really hard for me to understand sometimes. Even if it has been over 10 years now.

I started dancing when I was 7 years old. I ran cross country starting in junior high. The idea that I couldn't do something never occurred to me. But now I have fallen on the frickin stairs twice in 147 days. (YES, I counted them ...stupid stairs)

This isn't me. When I look in the mirror, I look like me. When I open my mouth, I sound like me. But this is not me. This is some alternate-reality-broken-version of me, but this is not me. This version of me has my hair (well...except for the grey ones) and my eyes...my memories, and all the same people in my life. But this is not me.

I think most people with a chronic illness, no matter what it is...but especially if it's chronic pain or something really life altering, look in the mirror and wonder who it is they see there. It's all part of mourning the loss of a part of yourself. And sometimes that can take a long time.

If you've read any of my blogs, you know that my life is divided up into the "before" and the "after". Before is who I was before July 17, 2001 and After is anything and everything after that day. That's when my life began to change. It started with pain in my left arm and 12 years later it has progressed into 6 surgeries, too many procedures to count, and 2 express trips down the stairs.

I see the girl in the mirror, but that's not me.

VD

I haven't been blogging as much lately. An awful lot has happened in the last year and some of it I'm still processing and I tend to do that in my journals as opposed to online, but I will post my yearly take on VD...Valentine's Day...or venereal disease, which you can get from spending your Valentine's Day with the wrong person .

The kidlet, in her ever present mindset of wanting to learn about the world around her, and us in our homeschooling philosophy, allow her to learn about history as it happens and the days we celebrate. We learned about MLK on his day, and Lincoln on his birthday the other day. December 7th we watched videos on FDR's speech on Pearl Harbor, the infamous "Day of Infamy" speech.

So today she wanted to know why we celebrate St. Valentine's Day and who was this guy anyway?

Turns out this guy was hanging out during the Roman Empire days, refusing to give up his Christian faith, marrying Romans, and generally causing hate and discontent in the Empire. So High Dude Claudius (his official title...or something) decides this guy is a pain in his ass and has to go. Valentine is arrested and imprisoned which is actually not going too bad and Claudius decides maybe this guy isn't so bad and starts liking him a little, hanging out with him, and trying to get this guy off his soap box. That's when Valentine made the mistake of trying to convert Claudius to Christianity and all hell broke loose. Now Claudius is really pissed and Valentine is sentenced to be beaten and stoned. (Good, tolerant guys, those Romans!)

Unfortunately beating the living crap out of this guy and stoning him doesn't work and he's still alive, so he then gets sentenced to be beheaded on February 14th. The Christians don't like this and the Pope declares Valentine a martyr upon his execution because of his work in aiding Christians and marrying them during the Roman Empire. Information leads us to believe Valentine was executed and martyred in 269 or 270 AD.  In 496 AD Pope Gelasius marked February 14th as a celebration in honor of his martyrdom.

The Pope declares this guy a Saint, giving him the Patron Saint duties of affianced couples, bee keepers, engaged couples, epilepsy, fainting, greetings, happy marriages, love, lovers, plague, travelers and young people. You know, all the lovey-dovey crap we surround February 14th with. 

So, as you go about wishing your beloved a Happy Valentine's Day, be sure to pause in remembrance of a dude in the 3rd century that went about marrying Romans even though it was against the law, and he was eventually beheaded for. (Kind of makes the whole marriage equality thing these days look like a little less of a thing, am I right?) And if you're going to pray to Saint Valentine, be sure to be specific in case he gets those plagues and lovers mixed up. 

Bubby

T minus 3 days until I get in the car and drive to Chicago to see my only son graduate from boot camp. He's almost 19 years old and wow! It has been a ride.

All I've ever wanted to do is raise a good man. I didn't have a brother, or a Dad, or even a Grandpa as a positive male role model when I was growing up. I didn't have any male role models. They say a girl's first love is her Dad but my Father bailed on me when I was 6. My mother re-married, but out of her husbands, 2 are now dead and 2 are MIA. To be fair, one never had a chance. He was the one I told "you're not my dad and I don't have to listen to you". So when he and my Mom split up it wasn't any great loss in my life. The one guy that stuck around and made me realize what it felt like to have a Dad died last year.

D at 5 months old

D was "Grampa's boy". Grampa was the only one that could soothe my son when he would scream for hours with colic. I had my kids young so they have never had the ideal life (but to be honest, who does?). I had my son and all I ever wanted for him was to grow up to be a good man.

D at 18 months old

I was a young mom and we had some bumpy times, and once in a while it would end up being me and Bubby looking at each other like "now what??". As the years went by and I learned more about how to be a better mom, I did better for my kids. And truthfully, with each subsequent child I learned more and did better. Because with the first one you sterilize anything and everything that might come within 50 feet of the kid. With the second one, you rinse it off if it hits the ground, and by the third one...eh, you figure they'll be all right pretty much in spite of what you do. So I did a little better with my son than with his older sister, but not quite as well as I did with his baby sister.

D at 6 years

I didn't have the kind of little boy that went running through the house, shooting bad guys and tracking mud. He wasn't the typical sports/cars kind of noisy little boy. He didn't build forts in his room, but he did build "boogie traps". He was quieter and preferred to play with his cars and and build stuff with Lego's. As he got older, it was books and robots and building electronics circuits.

D and I had some bumpy years. Tough years. "I emptied out his room" years. I kept telling myself that all I wanted was to raise a good man. There were times I might have thrown up my hands and thought "UGH how is this possible??".

But we made it. He's amazing. And I'm not just saying that because he's my only son and I'm his Mom and I have some kind of bias or something.

He's grown up to be a smart, sweet, funny guy. He can make me laugh until I have tears rolling down my face, especially when he's "reviewing" a movie.  He's a good man. He believes in honor and courage. He faces things that scare him and does them anyway. He's kind and believes in chivalry. He believes in protecting those he loves. He's amazing at math and I'm proud to see my little science geek having grown up into a man that uses all those things in his new career as an Electronics Tech in submarines.

graduating!

Nineteen years ago I was living in Huntsville, Alabama and I had just turned 20. I was in my last trimester and I had no idea how much my life was about to change. My only son has now grown up. We made it through some tough years and I have watched him turn into a smart, honorable man that I couldn't be more proud of.

This week I'll be watching him graduate into another phase of his life. He's now a United States Sailor. The next time I see my boy, he will be in uniform.

How the years fly by!

/rant

Our country has never been more divided. And Lord knows we are divided about everything! Gun control, abortion, death penalty, health care, religion, our military....you name it, there's a huge divide on where people stand. The hidden truth is that really only 10% of any given population has a very right or left wing approach to the issue at hand or an extreme opinion. The other 80% typically find themselves some where in the middle of the whole thing.

Most of the time, I am in that 80%. I try very hard to understand both sides of an issue and I understand that on the really big issues, there is never an easy or a "right" answer. I may lean a little left or a little right on a specific issue, but for the most part I'm the 80%, some where in the middle. Trying to understand the points and the passions of each sides argument and apply the critical thinking I learned in college.

But one of the very few things that really set me off on a tear is the debate on the flu vaccine. That is one issue that I feel very strongly about and I find myself unable to understand the people that are on the diametrically opposite side of this thing.

I feel that Americans respond most strongly when their opinions are born of fear. We, as a country, are terrified of the big bad buggity germs that are gonna get us so we run out as quick as we can and demand the flu shot every year. But you know what? The rhetoric that the drug companies and the media feeds us about the flu shot is not true! Running out (dragging all your kids in tow) and lining up for the flu shot is not going to protect you the way that you think it will.

To start with, most people don't realize that the "flu shot" is the CDC's best guess of which virus is going to take off in the Winter cold season. But these guesses are made 9 months in advance by killing migrating geese in CHINA! That's right, the CDC and the drug companies are guessing which 3 strains are going to spread based on info from pigs and migrating birds on the other side of the globe.

THEN, the "vaccines" are made up in the middle of Summer and injected into chicken eggs and grown. Finally, by September the vaccines are shipped and the American public is alerted.

We're having numbers like "60% effective" or "reduces chances by 90%" shoved down our throats but those aren't any more accurate than the guesses about which virus is going to infect you. The mass hysteria of the H1N1 virus in 2009 was because they guessed wrong! The CDC guessed wrong and emergency batches of H1N1 had to created in half the time it normally takes to manufacture a vaccine. Even then, the "pandemic" of the virus still only affected 7.7% of the population. There have also been reports that the "pandemic" was engineered to increase profits for the drug companies.

Because what you're forgetting, as the average American, is that the drug manufacturers are in it to make money. Consider this: if the same company manufactures your "flu vaccine" and you still end up getting the flu, then they have created medicine..."Tamiflu" or "FluMist"....designed to shorten your flu symptoms and make you feel better. Either way, they're still making a lotta money!

The hysteria of this week has sent me off on a tear. Just my 2 cents.
/end rant

Sources: (do some research folks!)
http://momsagainstmercury.org/doctors-question-flu-shot-statistics.htm
http://www.naturalnews.com/033998_influenza_vaccines_effectiveness.html
http://www.thelancet.com/journals/laninf/article/PIIS1473-3099%2811%2970295-X/abstract
http://vran.org/about-vaccines/specific-vaccines/influenza-vaccine-flu-shot/flu-vaccine-%E2%80%93-think-again/
http://www.infowars.com/new-study-finds-link-between-flu-shot-h1n1-pandemic/

New Year's Resolutions...again

It's that time of year again. Time to resolve to do things that make you a better person, or a healthy person, or whatever it is that you're spending your time chasing. Last year I resolved to take it easier, forgive more, love easier, and write my book. I got some of it right. The years always seem to go faster than you think you will, and crap inevitably comes up that gets in the way of what you're trying to accomplish for the year.

2012 did not turn out to be the year I thought it would. It started out as an innocuous sounding year. I thought for sure it was going to be a mellow year. No big life changes scheduled, it sounded like the first "easy" year I was going to have in probably five years. HA! Not so much.

2012 was mean. She lied to me on her way in. I'm pretty sure she's good friends with Tuesdays. I didn't have any major changes on the schedule but it would seem that a great many people I care about got smacked in the face with some pretty huge changes. We had 4 couples in my family split up, lots of drama, a death in the family, and so many friends moved all over the damn country. Friends and acquaintances died. Cancer claimed so many lives this year and seemed to be everywhere. We as a nation faced shocking tragedies and political insanity. It was definitely the kind of year we'll all be glad to show out the door next week.

So here are my resolutions...or really my goals for the year. I like to examine life as the new year approaches  rather than as a birthday encroaches. I'm at the age that I'm willfully ignoring the gain in age that a birthday signifies.

1. Continue my belief in my chosen faith. For me, that means embracing the teachings of Buddha and seeking enlightenment and finding a more peaceful existence within myself.

2. Take the time to read. You can't write if you don't even take the time to read. And for me writing is like breathing. I'm a much calmer and happier Xunnie when I write. Even if it's just journaling and scribbling out all the noise in my head.

3. Make sure I tell the people I love that I love them and make sure they know it because life is always shorter than you think and you never have as much time as you think you do.

4. Be brave, but say and do everything with love and kindness in my heart. Strive to be compassionate. There's a vast shortage of compassion in the world.

5. Be honest, even if that means showing a little vulnerability.

6. In the midst of the insanity of life, make sure I take the time to travel to see those I love. (see #3)

7. Find more patience. I know I can do that by feeding my soul's need for quiet moments and good tea.

8. Find the everyday opportunities for kindness and connection. Listen to people more. There are some great stories waiting to be told.

9. Be organized, but not so much that I'm driving myself crazy trying to stay organized. Sometimes life is just meat to be lived, not worried about.

10. Live in the moment. Remember that the very best moments in life never show up announced or with any fanfare. Remember details, those are the things that will make you pause and smile years later.

11. And basically just give a fuck about things. Care. Engage. It will be worth it.

12. And maybe, hopefully, in the middle of the rest of living my life, find time to write the damn book.

These are the things I'm striving for as another year is upon us. What are your goals?

'Twas The Night After Christmas

Twas the night after Christmas
and all through the house
were boxes and wrappings
and bows strewn about.

The loot of the morning
had been all squirreled away.
The kitties had many
new toys with which to play.

My child tuckered out
and finally off to bed
with visions of DSs and
new clothes in her head.

And Papa in new jammies
and I with my new book
finally sat down
and had a good look.

The papers were crumpled
as you walked down the hall.
The boxes were stacked
along the back wall.

The food was all covered
and put away in the fridge.
Even after everyone poked in
and grabbed just a smidge.

Tomorrow would mean
cleaning up all the mess
but I simply sat right now
and smiled in my night dress.

How blessed we are!
How lucky, I think
surveying the mess
as I finish my drink.

Then off, up the stairs
to a good night's sleep.
It'll keep, I think
tomorrow I'll tackle the heap.

But for now, as I drift off
and start to dream
I'm grateful for so much
more than it might seem.

My kids are all healthy
and my family loves each other.
It was definitely a tough year
for us all to weather.

But today in the middle of celebrating
we just laughed and played
and enjoyed winter vacation.

So I hope that your family
got lots of new toys
and in the middle of unwrapping
found the real joys.

~CC2012