On The Lupie Side Of The Street

Today I hung out with one of my closest friends and his daughter. We went to story time at the library and as I looked at all the children, all I could think was what amazing little things they are. They were still so young, I'm guessing under the age of two. They are small yet resilient, the world is their playground, and they are filled with joy. Even when they cry, it isn't long before they are laughing and smiling again. The little things appear to be brand new, over and over again, like the glimmer of a necklace. Small children constantly seem joyful to me, it's the smile on their face, the way the light shines in their hair, they can be like angels on earth.

It makes me think, "Why can't we all be like that?" Why can't we act like the world is our playground and find beauty in the small things? Why can't we shed a few tears and then smile suddenly? And why can't things in our life be new over and over again?

Sometimes I cook and I do something perfectly, I step back and admire the beauty of my dish. It's as if I've never cooked it before and I'm so proud of myself for doing well. Whenever I am feeling down and teary eyed, a friend somehow knows. They call, text, or email me and in those moments where I feel so alone, I realize I'm not and I smile. Every time I see orange day lilies, it's as if I'm seeing them for the first time. And the beauty of orange roses never fails to capture my heart, how the tips of the petals are always a deeper shade, it mesmerizes me. When I can remember that the world is my oyster, I'm a better person for it.

Today, the world was my oyster. I woke up feeling great, I wasn't in any pain, I wasn't sick to my stomach, and I could think clearly. No touch of a fever, no shaky sort of feeling, I felt completely normal. It was as if I was back in high school again and I was getting ready to bounce off to school. It just so happened that my friend called and I was invited to have a bit of fun. We went to story time, ran some errands, and then went back to the house. How wonderful it was to sit on the floor and play with blocks! I know I sound like a loony, but the simple things do it for me. And as much as I dislike reading the princess the same book over and over again, it seems brand new to her. I loved the random conversations I shared with my friend and how we goofed off and rough housed. No one will play around with me these days, I look breakable. But I proved today that I'm not! I don't think I have felt so happy in such a long time, I felt normal.

Of course all good things must come to an end and so did my perfect day. I started to have some inflammation and usually I am a grin and bear it type of gal, but I knew not to mess around with this. I was supposed to cook dinner and I was so excited about it. Unfortunately on the way to the grocery is when the proverbial shit hit the fan. I wanted so badly to just tough it out, to shut up and deal, but my friend knew something was wrong. I decided it was best for all parties involved to go home and rest up, so I could meet tomorrow with a smile. And I really do hate it when that happens, when all seems well and then then my life is all of a sudden grabbed from me. I realize at those points that I am not normal, that my life is different, but it's going to be ok.

I'm at home now, with my heating pad, in bed, and watching a special on ABC, J.K. Rowling: A Year In The Life. While I'm not really into Harry Potter, I enjoy the films on occasion but the books dragged on a little much for me. I realize that even though I'm not a wizard, and I don't go to Hogwarts, my life is magical. Today was magical for me, I was granted a small, magical gift that I wasn't expecting. It was like someone cast a feel good spell on me or I drank an ah-maz-ing potion. Even though my ah-maz-ing potion ran out, I have hope that one day soon I'll be granted another magical moment.

Here lately I've been thinking a lot about love and relationships and how I can tie all of that into my life. I tell myself that I'm going to be alone, that I'm better off that way. I convince myself that falling in love will only lead to heart break that leaves me in shambles. I force myself to believe that I'm not meant to be in a relationship anymore. I see myself as damaged goods, who's going to buy the can of tomatoes with the dent in it anyways? I've got dents and my back story is certainly not able to be contained in a can. My label may be smooth and pretty with great graphics but if you eat what's inside, you'll probably get botulism. At least that's what I tell myself...

Recently I received my very first "booty call." You may be thinking "Why are you advertising this Erika?" Well I'm saying something because this is a lesson on how not to act when trying to have physical relations with a person. The situation happened to me with a friend, someone whom I have known for ages and ages. It is very demeaning to me because I feel as if our friendship is not being valued. Is the only reason he keeps me around is because he wants to have sex with me? Am I only a pretty thing that is desired in a sexual way? It upsets me because I don't give off the image of being easy. I dress modestly, I'm not overly flirtatious, and I certainly do not have a promiscuous past.

To make matters worse is that this person has been calling on a somewhat daily basis to see how I'm doing. I rejected the "booty call" because I was sicker than a three legged broke neck dog. I'm sorry but when I'm in pain, feeling like I'm going to throw up with a fever, and fall over all at the same time, I'm not in a sexy place. The emotions that come with physical relations are not exactly flowing through me. When I tell you that I am feeling really sick when you proposition me for sex, that's code for "I'm not going to roll around in the sheets with you." What makes me feel worse is that you have called in the days following to check on me. You didn't call me because you actually cared about how I was feeling. You called because you wanted to see if I was well enough to have sex. Let me clear one thing up for the world, I may be feeling better now, but I'm not going to give it up for just anybody.

Calling me and basically asking me for sex is not a very good incentive. Vivian, the character Julia Roberts played in Pretty Woman so famously said "I want the fairy tale." That's right people, I want the fairy tale, I deserve the fairy tale. I may have some damage, I may have a back story, but I believe every girl (or guy) deserves the fairy tale. I want to be wowed, wooed, and charmed till I'm floating in the air with glee in my heart. I want a bouquet of orange flowers to be waiting for me when I go into work. I want to be surprised with hand written love notes in the mail. I want to be embraced with a warm hug after a few days of being apart. I want someone to call and leave me funny voice mails that will make me crack up for hours. I want someone to think about me and believe with all of their heart that I am the best gal out there.

Now I've been catching some flack from some people and I know they mean it in a joking way. But apparently I'm throwing away the chance to have sex. I don't see it as throwing away anything. I'm not at in a place in my life where I feel comfortable having one night stands just so I can have physical contact. I crave the emotional connection of a relationship more than anything. Knowing that at the end of the day, I have someone who loves and cares about me more than I ever thought possible. If I were a person who felt comfortable loving and leaving then that would be one thing. But I need and DESERVE more than an hour in bed and a kiss good bye. If you're able to do that though, good for you, it's simply not for me. Go ahead and call me old fashioned, it's the way I am.

I deserve to be happy, I deserve to have love, and I deserve not to be hurt. I'm not going to go out and look for love either. When the right person comes along, so be it. And if they aren't scared off by my L.L. Bean luggage then they are definitely a keeper. If they are scared, ok, I'll keep living and moving on. Eventually, I will have true love that lifts me off me feet in the beginning and grounds my soul in the end. I know that relationships aren't easy, they take work, and sometimes you want to give up. But I also know that despite the pain and frustration relationships can bring, there is joy. Joy that makes up for all of life's faults. I'll take the joy, the frustration, the ups, and the downs. I'll take it all in stride because I want all of those things in my life.

Today when I was at work I was given the task of going outside and rearranging items and cleaning everything. I was thinking to myself how much my life has changed, how much I have changed. I am not the same person that I was back in 2006, when I was somewhat healthy. My life was taken from underneath my feet, it was then crumpled up, and shoved in a trashcan. I was the the "no hope" case. But yet, here I am today and my life has changed. I am extremely thankful for my life because I'm technically a little bit of a miracle.

And I feel horrible about this but I was thinking about how some days I feel like it's all my fault. I feel like it's my fault that I got sick, I feel like I did something wrong to have this happen to me. I feel like I'm not a good enough person and that maybe I'm disposable. I was thinking about how great my life was before I got sick, I had an amazing job, I was in college, I had tons of friends, and all of my family loved me. But then once I got sick, everything changed. I couldn't hold a job, there was no way I could handle school, and a lot of my friends up and left me. Some of my family even turned against me. It's like when you're sick you almost become a liability and no one wants to be around you. And you feel so alone in the first place but when people up and leave, you think it's your fault.

There's a little girl I know, she's barely a toddler and I wanted to tell her something so badly today. I wanted to tell her to eat her vegetables, take a vitamin when she's old enough, and do everything her parents tell her to do. I was going to warn her not to smoke or do drugs, drink only in moderation and never drive when she does so. I wanted to tell her to do well in school, to stand up for herself, and do the right thing no matter what. I wanted to tell her never, ever to get sick with something that can't be cured. But if ever she did, to never lose hope because hope will always carry you through.

I wanted to tell her all this because once you get sick, you can never have your old life back. And you dream about it, you want it back so badly, it's gone though, forever. Most of all, I wanted to tell her not to be like me. Here I am, 23 years old, working a job that is just above minimum wage. I can't do the same work I used to do which is restaurant work. I have only two goals for each day, to make it through and to be a good person. I'm trying to get my life in order but it's really hard when nothing seems to go right. It frustrates me that I had my entire life planned out and none of it went as planned. I'm having to start over because most everything I had was taken away. I want her life to be better than mine. But she has so many more years to go and it will be years before she ever understands any of this.

So here I was complaining to myself about my life and basically how I want my old one back. I was then given a huge slap in the face by the universe. I reminded that when you least expect it, it could all be over. I remembered how my life should have been over but I kept going, no one was going to tell me when I should give up. Life is weird like that, right when you feel the worst about yourself you are reminded in the worst way to buckle up and get over it. That's what I'm trying to do, I'm getting over the fact that I can't have my old life back. I will never be the same person, I will always be sick, but at least for now I have my life. And I need to be ok with that, I need to be ok with the fact that at least I have a job. I need to be thankful that at least I have a few relatives and friends who love me. I need to remind myself that it could be so much worse and there is always someone who is suffering more. I need to tell myself that no matter what, I'm going to be ok and one day I'm going to be a great person who does amazing things for others.

In a way, I'm lucky, I got a second chance at life. I get the chance to be the person I couldn't be the first time around. I can be whoever I want to be, not what other people think I should be. And I'm becoming that person, I'm learning to be happy when I'm happy, sad when I'm sad. I'm learning to say what I feel when I feel it. I'm understanding that it's good to smile but it's also ok to cry. I'm letting people in my life instead of blocking them out with The Great Wall of Erika.

I had my "bitch" moment earlier today and it's ok, it's done now. I am moving on and making new memories that I may not remember, but at least I can live in the moment.

Over the weekend, a really good friend of mine bought be a present. I didn't know what to expect when I was told I was getting one. So I was surprised when I was handed a small slip of paper. When I looked to see what it was, I saw it was a lottery ticket. A mega millions ticket where the estimated jackpot is $94,000,000. You're probably thinking big deal? Right? Well, you're wrong.

This lottery ticket expresses hope to me. Realistically I know that I have a snow ball's chance in hell of winning. I know that I don't deserve to win that much money either. But to me, this lottery ticket gives me a little bit hope. I have a little slip of paper that could possibly change my life. I have a chance that might enable me to make my dreams and the dreams of others come true. It may be a minuscule chance, but a little something has to be better than nothing?

You know what means more to me than the chance of winning? Yesterday was my first day of expressing how I truly felt. I was honest, raw, emotional, I was every thing I wanted to be! I was given this ticket on my first day of being me. It almost felt as if it said "Congratulations on making it through your first day. For just being you." This ticket gives me hope, it shows me that even though the odds are against me, I could just win. The odds are against me in most aspects of my life but there is a chance that something, somewhere is going to give. That I will win a battle!

I'm already winning a battle too. I'm fighting against being so unemotional all the time. I'm fighting against not being who everyone wants me to be. It's difficult not throwing on a fake smile or hiding how I really feel. Right now though, I'm dead dog tired, it's been a long and emotional past few days. But I feel I've made a lot of breakthroughs. I have reached inside myself and in a way that has helped me to reach out with others.

Me and my little lottery ticket of hope are going to hope. We're going to hope that my life changes, whether or not I win. We're going to hope that I am able to consistently make changes that positively impact me first of all, others second. I've put other people's needs in front of mine for so long now it has caused damage. It is time for that to change, the change is coming for me. I'm not going to be the same girl who I was last week. And next week I am not going to be the same girl who I am this week. I am going to change, evolve, and become the woman I want to be.

I also never thought of the 28th of a month as a particularly lucky number, but now I do. I just remembered the reason why I think my Grandpa waited until April 28th to die. April 27th is my half birthday and he was the one who celebrated it with me. I would get a little card or a phone call wishing me a happy half Birthday. It was our little thing, our little secret that no one else cared about. And even though he couldn't call to wish me a happy 18 1/2 birthday, he stayed alive for it. He waited until early in the morning of the 28th to die. I honestly think he knew how much it meant to me. Even though I couldn't be there with him in his final hours, he knew. I don't think he could let himself die on our secret day. And on my lottery ticket, the first number is 28. It feels like a sign to me.

I'm going to save this lottery ticket no matter what.

After being awake all night from a bout of insomnia, I've made a lot of decisions. A lot of final decisions, meaning no ifs, ands, or buts. Starting today, I'm going to be me. If I feel happy, darn it all I'm going to be happy! If I feel sad, well I may just shed a tear or two and be sad. If I'm angry, I'm going to let all of that rage flow through and out of me. If I don't feel good, I might say something because I'm tired of putting on the happy face when I feel like I am going to fall over. I want to start being the person I feel on the inside.

I've tried to embrace this idea before. Sometimes it lasts for a couple of days, a couple of weeks, or at best, a couple of months. But this time around I'm going to try hard so that it sticks. I've got a lot of baggage that I need to work through and eventually let go of. I cannot let pain and hate impact my life as much as it does. I can't be afraid of the past or the future. I have to move on with my head held high, telling myself every day to "Just be me." A person cannot be expected to be brave every single day of their life. Why do people expect me to do that?

I know there are going to be some people out there who will not be happy with this. They will say "What's up with your mood?" Well world, however I am acting when you see me is what I am feeling. I'm going to learn how to wear my heart on my sleeve. I am going to see that in tears there are strength because with each tear, I'm letting go a little piece of pain. With less pain, I'll be stronger emotionally, physically, heck maybe even mentally? Eventually I will become the person who I can be proud of. It won't matter what other people think because this is my journey.

And I have a fabulous new friend to thank for helping me to start this journey. For inspiring me, for encouraging me, and for helping me to believe that it's all going to be ok. I'm not that great with emotions or with words, I don't even know why I have this blog. But I think this blog is a good thing because it captures these moments in my life. It takes my random thoughts and records them. I hope that many years from now I can look back and read this. I'm not going to remember this experience unfortunately. That's kind of why I have this blog I think. More importantly, that's why I have friends, to remind me of who I really am. And one day to remind me of how far I have truly come.

Here's my first raw moment of being me. I'm crying which is something I wouldn't normally do. I just have a few tears streaming down my face. It's ok though, it's all going to be ok because I'm being me. And it's the 28th and every month I miss a family member who passed long ago. He was the person who I was closest to in my family. And the funny thing was, we weren't even related by blood. But he saw me as one of his own grandchildren. He told me his life stories, he helped to make my life better when he didn't have to. We were unbelievably close. We were so close that when he died, it was his wish that I did the eulogy.

The other night I was in World Market with my Mom. I wanted to see if they had any sugar free candies (I keep hoping for a sugar free Galaxy bar). As I passed an aisle, I saw that they had little fruit flavored candies from France that came in a metal tin. La Vie Pastillines to be precise. Grandpa always had lemon flavored ones and he kept them in the side storage compartment on the passenger side of the car. I remember getting in the car and the first thing he would do was open up that small tin. I know the acidic bite on my palate mixed with a hint of sweetness and lemon extract all too well. I remember if I had more than two, I would have those little burn spots in my mouth. He also loved Werther's Original caramel candies. The funny thing is, I never liked them. But I pretended I liked them because I wanted to be like my Grandpa. Every now and again I'll get a craving for one, I can taste it in my mind. I remember the sound of the wrapper as I opened it, quietly crinkling under my small fingers. The smoothness of the cold, hard candy against my tongue. How it slowly melted away and coated my throat. How the last little bit always ends up getting stuck on a tooth and I had to pry it off with my tongue.

I don't remember a lot about my childhood, but most of my memories are those that were spent with my Grandpa. And I'm thankful that I remember them. They are moments I can never get back but cherish for as long as I can remember. I think he would be really proud of me if he could see me today. I may not have a college degree or a fabulous job. But I'm standing up for myself, I'm becoming the young woman he would be proud to say was his granddaughter.

Dear Lupus,
I know that you love taking residence in my body. As much as I detest your presence I am unfortunately stuck with you. I wish you would just pack up and leave, in the same way that allergies do every spring. I know my body is all warm, comfy, and let's face it, dysfunctional. I understand that it's a mansion to you and you rule the roost. Well guess what? If I had my way, I would have kicked you out on the street eons ago.

Since we have to live together for as long as we both shall live, we might as well have some ground rules. First of all, you are no longer allowed to give me crazy lesions in my mouth and throat. I know you love destroying my mouth and my dentist loves you for it. But you need to stop, now. Second of all, bug off with the rashes. I truly do appreciate the fact that you do not take residence on my face. But the fabulous rash I'm rocking on my arm is really making me rethink wearing that short sleeved shirt I was planning to wear on Saturday. Of course you just don't care. How about my joints? If you want to make the joints in my fingers hurt, let's try one hand at a time. That way I can still do things with the other hand. If you want to make my knees feel like they are going to disconnect from my thighs and calves, do it on a day when I'm not working. Oh and enough with the dearn twitching! I really do not appreciate the sudden and very random electrical pulses that flow through my body. I look like an idiot when it happens. I know there are some things I can't get rid of, like kidney infections, digestive difficulties, and heart issues. Just give me a break on everything else.

I'm learning to live with you, Lupus. I'm appreciating my good days and understanding my bad ones. I give you as much rest as I can afford while leading a somewhat normal life. I'm trying to do everything I can to accommodate your lengthy visit. We might as well go to Vegas and get married at this point. I don't want you to rule my life and I tell people that you don't. Truthfully, you do. You own me, every dearn part of me. I wish you didn't, I wish I could be normal like I used to be. I also know I am extremely lucky and I should be thankful for each day I'm alive. Some days I'm not, I know it sounds rude and inconsiderate to you. But some days you make me wish I could just go ahead and die. Somewhere though, deep down inside of me, something forces me to keep going. Despite the complications you inflict on me, I am better than you. I will not give up just because you make me miserable. I will not give you that satisfaction.

I want us to get along. Do you think one day we could be friends? If you start to be respectful of me and my body, I'll respect you as a disease. Life is about compromise you know? You think you could start to compromise with me? I hope you are listening to me and I'm not wasting my time. I'm just hoping for the one day when I'll be completely OK.

I had an absolutely amazing weekend! I've been working so hard here lately to get my life back. I have a job, even if it is only part time and temporary. I'm trying to figure out a new career path that will work with my body instead of against it. I'm also figuring out what my body can and cannot handle. Being outside, even in the shade, with sunscreen, for two days in a row makes my body very unhappy. I'm extremely photosensitive the sun literally makes me sick. It started with a lovely rash on my chest on Saturday night, pointed out by a friend. I was too busy being social and having fun to pay attention to it. Now my body is feeling really grossed out, everything is aching down to the core. But that's the price I pay to act my age!

I also want to say that I have the best friends ever. Everyone says it but I really do! I'm so thankful for the few people I share my life with. I've been a social butterfly before, had tons of friends, but then when they going gets tough, they up and leave. But I know now that if the going ever gets tough with me again, my friends will stand by me. I also hope that they know I will always be there for them. I will take whatever issues I have with myself and shove them away to be by their side. I have one friend in particular who has been extremely supportive over the past month or so. Each time we hang out, I get to know her more. She likes to think of herself as "the cool Mom" but I think of her as the cool friend with a heart of gold.

This weekend it was all about the food. I talked about food, cooked food, tweeted about food, it was foodyliscious! It reminded me of my good ol' days, working in kitchens, my life revolved around food. I was never tired, never sick, and everything seemed to be perfect. I dream about foods I wish I could eat again. But I know every food I eat has consequences and I have to weigh the pros and cons. I saw a delicious recipe for a chocolate tart and just about fell out in the kitchen. I also have the urge to one day make it to New York and eat my way through it. It will probably be 20 years from now when I have money, when I'm fixed up, and I may even have someone to go with me at that point. A girl has got to have dreams right?

I love my friends, I love my life (even when I say I don't), I love this blog. It's all so random but it's me and I'm about as random as they get. Crabcakes anyone? I love the fact that after a couple of years of being sick, most days I'm feeling better. I love that I am trying to be more social and I am actually feeling ok with it. I love that I'm getting used to my body and even when it's constantly attacking itself. I love that my life with lupus is never normal, every day is completely different with challenges I never thought I would face. I love knowing that one day I'm going to really be able to live and be free. I love that I have hope for a future, a future that wasn't supposed to be.

Most of all, I love the fact that I'm slowly becoming the person I want to be. It may not be the person I dreamed about in the past. It may not be what everyone wants me to be. But my happiness depends on me and not on anyone else. I am making my own happiness and I love that.


P.S.- Even though I love my life, I still want to crawl under a rock. I need a bucket of anti-inflammatories to pull me out of this one.