I need more spoons*....(an anniversary, of sorts)

It's hard to believe, but this month marks five years since I was diagnosed with Rheumatoid Arthritis.

Five years of daily challenges. Five years of almost constant exhaustion and pain. Five years of never having enough spoons. Five years of pushing myself more and more. Five years of finding out who will always be on my side. Five years of fear and worry. Five years of working with the Arthritis Foundation and meeting some truly amazing people. Five years of bad nights of sleep and worse mornings. Five years of realizing how much strength I have inside of me.

Five years. It seems like a million. It's hard to remember not being sick, not having a chronic condition that forces me to slow down.

Five years of give and take. Of every choice I make during the day having a bearing on what I can do later on. Of making trades - I can go out this night, but the next I need to be in bed at 9. I can play softball two nights a week, but then I need to rest for two days. I can go grocery shopping today, but I can't cook until tomorrow.

Of course, not every day is like this. Some days I have more energy than others. Some days, it's easy to forget that I'm sick. And to look at me, most people wouldn't guess that I'm not a typical, healthy 20-something. That's life with an invisible disease - nothing to show the pain you're in, how tired you are, how the meds you just started are making you sick every morning, how you literally roll out of bed in the morning, because you can't bend your knees to stand....

But the people who know you, who see you often - even if they don't know about your illness, even if you've never said anything - they see the signs - the big, scary bags under your eyes. The IcyHot you keep on your desk. The flats you bring to work in case your heels become too much. The slow, hitching walk of someone who is fighting to get through every step. Your friends familiar with your situation will try to understand, but it's impossible. Until you have been in it, you just can't get it. People can usually understand the physical challenges, but the emotional and mental struggles? How can you really describe the frustration of not being able to do simple tasks? How can you put into words how embarrassing it is to have to ask someone to tie your shoes for you, or open a bottle of soda? Sure, you try to laugh it off, try to act like losing control isn't killing you, but it is. And for me, someone who is independent and stubborn to the core? I will make a million jokes before I admit how helpless I feel. I will struggle with something for hours before I admit defeat. And I will hold my head up until I am safely alone before I break down.

But the good things? I've seen the good in a lot of people. I have met amazing people, both online and off, who struggle with RA and Lupus and OA and any number of other autoimmune diseases. I have a great support system, between them, and my amazing family and friends. I have grown up and grown stronger. I've learned to slow down - that everything doesn't always have to be done at warp speed. I've started to take care of myself better.

And I'm ready to take on the next five, and however many come after that. RA, prepare to get your ass kicked.

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*Title comes from The Spoon Theory by Christine Miserandino at But You Don't Look Sick. One of the best things I've seen that tries to explain life with a chronic illness.

Spin Cycle: We've got tonight, who needs tomorrow?

Oh, prom. The poofy dresses (Looking back, I am glad I went with a more classic, simple dress. The fact that it was only $60? Even better). The bad music. The hours of hair and nail appointments. The lack of a proper date (some things never do change...).

It's hard to believe it's been ten years. It's almost enough to make me feel old. That, and the fact that I can barely remember it...I am going senile, apparently.

Things I do remember:

-Bob Seger. Our prom song was We've Got Tonight which is a song I had already loved, and still love to this day. I'm not sure that it was entirely appropriate, since it's about having a one-night stand and knowing it's not going anywhere. I don't mind the sentiment, but really? I am kind of surprised that at a school where we couldn't show bare shoulders for fear that amount of flesh would be distracting, they let that song get chosen.

-My date, Phil. (Yea, I've talked about him here before). He was my default date for dances in high school, and was a pretty good one. Even if he did pull my chair out from under me so I fell down (it was to lighten a somber mood, so I didn't really mind)

-Going to Farmer Jack after prom cause nothing else was open, and stealing a 'Caution: Wet Floor' sign.

-Standing in a giant circle on the dance floor with a good chunk of my class, all singing 'Lean On Me'.

-Dancing with the guy I had a crush on for way too long, since he was really not that amazing.

-Dress shopping with my girls. I think that was actually my favorite part - all trying on dresses at David's Bridal, looking like freaking Easter eggs, but all looking gorgeous.

Annnnnd that's about it. It's funny, because prom is always built up as such a huge event, especially for girls. I remember always thinking that something would happen, something would change - like being dressed up and realizing high school was almost over would make the guy I liked realize he wanted to be with me, and we would dance all night and fall in love and live happily ever after. Instead, we danced and then awkwardly one-arm hugged each other, and went back to our respective dates. I just pictured it as being something more than it was, and once I realized that it wasn't going to be some life-changing event like it always was in movies, I guess I was a little sad. Maybe not sad, maybe that's not the right word....But I was disappointed. And maybe that's when I started to become a little more cynical - because that was when I finally realized that happy endings and fairy tales are all basically bullshit.

I still have my corsage, though. I guess I'm just a sentimental fool about some things (who keeps crap for way too long for no good reason) (I think the one on the left is from Homecoming the year before - also a dance that Phil was my date for. Boy BFFs are the best!)

With the ten-year reunion coming up (and me undecided if I'm actually going to go) I wonder if the event can possibly live up to the expectation - seeing old friends, catching up with out-of-towners, wondering who turned out better than expected and who just completely fell apart.  Facebook has kind of negated the need to do this, which is why I don't know that I'll bother. In movies, the 'cool' kids have all turned out to be losers, and the outsiders are the most successful and the happiest. But I already know that's not totally true, and I really don't need to see evidence of other people's successes when I have so many failures.

Mostly, if I go, I think I'll just, once again, end the night feeling a little bit disappointed, a little bit relieved it's over, and a little bit more certain that there are no happy endings in sight. At least not the stereotypical Hollywood ending, and while I'm not necessarily sad about that, and I am good with my life for the most part, I am a little sad that I've just stopped expecting one. I think back to me at seventeen, and how hopeful and optimistic I was about life and love (and yes, naive) and wonder how I got from there to here. And I wonder if I'll ever look at anything with that wide-eyed enthusiasm again.

I'd give anything to...

At least I come by it honestly....(Happy Mother's Day!)

My mom used to love getting my sister and I to call her "Beautiful Mommie Dearest".

I think that helps explain where my twisted sense of humor comes from.

When I was younger, I didn't see much of my mom in me. I was always shy, and super sensitive. Mom is outgoing, sparkly, a force of nature. I seem to remember being convinced I was adopted at one point, because I felt so different from my family (and also, because I had just read the Babysitter's Club book where Claudia thinks she's adopted...all of you girls of the 80s know what I'm talking about).

But as I grew up and broke out of my shell, I started to see more of her in me. We have the same stubborn streak. We have the same weird sense of humor. We are outgoing and tend to get sucked into whatever it is we are working on. We can both read for hours on end. We have the same smile and the same eyes, although mine have more green in them. And we both enjoy a good margarita and movie night, although it's been a while since we've had one of those.

The only reason I would ever consider moving to Tennessee is to be close to my parents again. It's hard not being around them. I miss my mom so much sometimes....There's no one who knows how to make me laugh like she does, or who can comfort me in quite the same way. I always want to share everything with her, from how work is going to my birthday plans to the newest guy I have fallen hard for. She's always on my side, just happy that I am safe and healthy, even if I have done something fairly (or, let's face it, EXTREMELY) stupid.

I have a lot of 'second' mothers, and I have the best aunties in the world, but nothing compares to a mommy. And mine is the best. And while we haven't always seen eye to eye, we have always loved each other, and we will always bring out both the best and the worst in each other, and really? I couldn't ask for more.

I love you, Momma! Happy Mother's Day!

Me, Momma, and Sara, circa 1985ish

drowning on dry land...

I just woke up from a ridiculous nightmare, and I'm still trying to let myself breathe again. I haven't had a full-on nightmare in a while so this one really freaked me out.

The beginning of it started off normally enough...I was hanging out with some friends, and decided to leave wherever I was to go visit some others. It was close by, so I decided to walk. Well, apparently in my dream, I was terrified of dogs, because I was trying to do some evasive manuevering to get away from it....and somehow I ended up at one of those big play structures, with the big twisty slides, and, like, freaking towers, and obstacles, kind of like this, but times a hundred.

Anyway, so I end up at this place, and one of my friends is there, with her daughter. Her daughter got underneath the structure somehow, and I said I would go under and find her. So I start crawling around under this play structure, and at some point, a couple police officers get there to try and help, because we can't find her. And finally, I see her on the other end of the structure from where I am, and the cops go to get her. Meanwhile, it starts raining, and the sand the thing is sitting on just starts to cover me. And I couldn't move because it was weighing down my arms and legs, and I couldn't yell without it getting in my mouth. So I was banging on the underside of one of the slides, and no one could hear me, and I was freaking out and couldn't breathe and could feel myself getting more and more trapped.

And that is when I woke up, gasping for air and freaked out.

And I am pretty sure I know exactly what this means. I'm looking some of it up on Dream Moods right now, and so far I've been right on. Being buried alive means you are being undermined or stifled in some way. Wet sand equals a lack of balance. Calling for help means you are overwhelmed and inadequate. Playgrounds suggest needing to escape daily responsibilities.

Check. Check. Check. And check.

Right about now, I am really wishing I had the time for a long vacation....

The most beautiful smile is the one that struggles through the tears.

My next tattoo is going to be 'Que sera, sera' in script on my wrist. And it's going to be in memory of my Grandma K, who said that all the time.

Today would be her 92nd birthday.

It's impossible for me to not think about her most of the time, but today especially. There are some people in your life who shape you, who push you, who make you better, and my grandmother was one of those.

Every struggle I've had in my life...every war I've waged, whether it was against myself or others....every thing I've ever tried and failed at and tried again....The part of me that refuses to give up or give in, that refuses to accept limitations, that refuses to surrender...that comes from my grandma. She was a woman who survived anything that came at her. She battled and beat cancer more than once. She stood by her husband and her child and her grandchildren whatever happened. She did everything she could to make sure that her son and his children would have a good life. She looked for the best in people. She looked for the best in life. She was an optimist and she passed that on.

And she was beautiful! In all the ways that mattered, and in many that didn't. She had the kindest eyes I've ever seen. Full of compassion and caring, but with a glint of humor. She was always ready to laugh. Always ready to humor a child by listening to a stammered knock-knock joke, or bumbling story, and laughing her heart out. She could make you feel like the only person in the world she could possibly want to be listening to. She was selfless and funny and generous and loving and big-hearted and a force of nature. She knew when to make you laugh, or when to take you in her arms and comfort you with soft words and hugs. She displayed a stick figure drawing on her refrigerator with the same care as a straight A report card. She would take the time to do whatever it took to make other people happy, whether it was finding the perfect present, or cutting up watermelon into the kind of slices you preferred. She was a great cook and I wish I had cared more when I was younger so I could have learned more from her. I think of all the times I spent at her house, and wish that I had listened a littler harder, paid a little more attention, asked more questions. There is so much I could have discovered, so many things I wish I knew!

Grandma died 5 years ago this past December. It seems like yesterday, and a thousand years ago, all at once. There's not a day of my life that I don't think about her, feel her, discover another part of the influence she had over my life. I was unbelievably blessed to get to spend so much of my time with such an incredible woman. Some of my happiest memories from childhood are the times I spent at my grandparents' house, my sister and I dressing up in stupid outfits, or 'building' things in the backyard, or just sitting at the table coloring with Grandma. She was content with simple pleasures, and the greatest one of those was seeing her son and his children happy and healthy.

It's been over 5 years. And I'm starting to forget some of these things. I'm starting to forget the smile, and the softness, and the easy way she could turn an entire day around. I'm starting to forget the sly look in her eye when she was teasing my grandpa, and the look of her hands as she worked in the kitchen. And that scares me. How could I possibly forget any part of this amazing woman?

But then I look at my dad. And I look at my sister. And I look at myself. And I imagine the sons or daughters I may someday have.
And I realize that no matter how long she has been gone, her legacy will live on. Her touch on our lives will reach into the next generation, and the one after that, and however many come after.

And I know that she'll be looking down on all of us with love in her eyes and a smile that comes from the heart, giving a little push whenever we need it, and being the quiet voice in our heads, reminding us that whatever will be, will be.

RTT makes me sad, because it means I'm still very far away from Friday...

*I've been on a rollercoaster the last month or so and I feel like it's starting to settle down. I'm sorting things out in my life at the moment and trying to figure out who and what I want to be. If there is a handbook out there for this, please, someone, let me know.

*Been feeling lonely lately. Spring. It does that to me. Stupid season. Doesn't it know I'm supposed to be independent and strong? Heh.

*Winter semester is over and I am off school for 4 months. I'd be psyched for all the free time but work is going to take over my life at least until the end of June, so, well...gotta do what I gotta do, I guess.

*I am free!! A week earlier than expected! I haven't really posted about any of this, and I'm sure I will soon, so you can just wait on that...


*Softball season is officially underway. My work team? Kicks ass. We had our first game last night and won 18-6, or something like that. And I made a couple good plays.
My other team? We have room for improvement :-) I have full confidence that we'll do it though. I need to hit the batting cages this week, at least once.

*My elbows are incredibly dry. I think I've become immune to all my usual fixes. Anyone have good lotion recommendations?

*I have a tan. In April. This is unheard of for me. (And yes, my tan is another person's ghostly white, but whatever. I have sensitive alabaster skin. Anything other than translucent, blue, or tomato red is a miracle.)

*Thanks to last week's Glee I am on a Madonna kick. So if you happen to see me, and I happen to burst into 'Express Yourself' or 'Like a Prayer'? Don't say I didn't warn you.

In the end, the love you take is equal to the love you make...

"We accept the love we think we deserve."

That line, from The Perks of Being a Wallflower by Stephen Chbosky, is one that has stuck with me in the decade since I first read the novel.

There's a lot of truth in the sentiment. We search for someone who makes us happy, who makes us better, who makes us complete. Sometimes, we find that person. Sometimes, that person turns out to be the opposite of who we thought they were. Sometimes they hurt us. Sometimes we let them. Sometimes we put all our energy and heart and soul and faith into a person who has done nothing to earn any of them. Sometimes we cry ourselves to sleep, wondering why we care so much, why we can't just walk away, why this "great love" has turned into something we never thought we would put up with.

I know I'm guilty of it.

There was a time when I took any scrap of affection that was carelessly tossed my way and clung to it with every part of me. When I was so love-starved that I would put up with lies and cheating and selfishness and emotional torture, just so I wouldn't be alone. When I would drive home, sobbing so hard I could barely steer the car, totally unsure what I had done that made me deserve this treatment. Wondering when I became so weak that I would stay with someone who didn't give a damn about me. Wanting to rip my own heart out, because it wasn't doing me any good anyway.

But I always stayed. I always stuck it out. I thought that I couldn't do any better. I thought that this was it. This was what my life would be like. I wasn't pretty enough, or funny enough, or smart enough to have the right to be happy, to have someone who actually loved ME. Not the doormat. Not the caregiver. ME. I got so used to being in a constant state of loneliness, even when I was sleeping next to someone. But I still never thought of leaving that. I just wanted something, even if it wasn't love. Even if it was barely involved. Even if my heart shattered over and over again, while I tried to figure out what to do to make myself better, more deserving, easier to be with...anything to make my screwed-up relationship into something more.

But then, something happened. The last straw. The time I really needed someone to be there, and he wasn't. He couldn't be bothered. There I was, crying and lost and empty, reeling from the loss of one of the most influential people in my life, and he couldn't be bothered to even come up with an "I'm sorry for your loss." I ended up going to a new friend, one I barely knew, who held me and let me cry and suddenly made me realize that I WAS worthy of being cared for, of being loved. That I was a good person, and that while I had my faults, I deserved someone who would drop everything to come pick me up when I couldn't get myself up off the floor.

That was when I knew I had to let go.

Since then, I've been in my fair share of rough relationships. I've been hurt, and my heart is worse for the wear. But I have made it a point to never let things get to the point where I didn't know why I was in it again. And yes, I've made some mistakes and given little pieces of myself away to some people who probably didn't deserve them, but it was always on my own terms.

And now? I'm stronger than ever. I'm more confident. I know who I am, and I know what I deserve. And I am holding out for it. Whether I find it now, or next month, or in twenty years, I'll know that, as the song goes, in the end, the love I'll take will be equal to the love I'll make.

30-Day Challenge: End of the line

I give up. I am not writing about anything else for this. Especially since my sister just posted Day 15, and it's 'Fanfic'.

I am not a fangirl.

So, later today, or maybe tomorrow (but probably Sunday) I will return you to your regularly scheduled erratic blog posts.

G'day.

Day 12: I do what I want

My mind is in all sorts of fucked up places right now.

I'm seeing other people grow up and move on, and it makes me feel...not like a failure...but...like I'm missing something. Like I should be in a better place than I am. Like I should be more of an adult, more stable, more responsible...something. I don't know.

It's not that I particularly want what they have. I don't want to be getting married, or having babies, or buying houses. I like that everything in my life is kind of...temporary.

Maybe *like* isn't the right word. I'm comfortable with it. That's better. I'm comfortable with not being tied down to anything. I'm terrified to put down any kind of roots, anywhere, whether it's a house, or a relationship.

I like only being committed to myself. Everything else in my life is...transitional. If I lose it tomorrow, I'll survive. I'll get through it. I'll move on.

But I wonder....why am I so okay with this? Shouldn't I be looking to settle down? Aren't I getting to the age where it's normal to want to plant yourself down somewhere? Shouldn't I be wanting something real?

Or should I just stop comparing myself to other people, and not putting any stock in whatever milestones signify being a grown up?

Day 11: A photo of you taken recently

This isn't *that* recent, but it's classic Andrea...

Me, rockin' karaoke and Heart's 'Alone'. And no, I do NOT require alcohol to sing. This is my sober (and incredibly exhausted) period.

Cheers, darlins!