On The Lupie Side Of The Street

The funny thing is that I used to be normal, well as normal as one could be. I was a enthusiastic and intelligent college student. I worked, I volunteered, I had relationships, looking back on it, I had the world. But now I hardly ever get enthusiastic over anything because I know in a second that it could get ripped away from me. I'm not as intelligent as I once was, lupus has zapped my brain making it like a bowl of pudding. I had a job and I could work double shifts in restaurants and I wouldn't even get tired. I loved volunteering, especially with youth and the underprivileged. I had relationships, I lived and loved and I was loved back. I had the world in my hands but then in a heart beat, it got ripped away from me. Three years ago my life changed and I was no longer normal. I was sick.

Now I'm the healthiest I've been in three years. Yet for some people in my life, I don't seem very healthy. But they also didn't know me when I was at my absolute sickest. In a way I am glad some of these friends didn't know me one or two years ago. I've saved them a lot of pain of having to watch me deteriorate. It's even better because some of these people didn't even know me when I was healthy. They don't have to mourn the loss of the Erika of days past. Yet every day, somehow I end up mourning a little piece of me that has died. And it feels like every day a little piece of me dies. It's the little something that I can't do and for the life of me, I can't get back. So I'm thankful that the few new friends I have don't have to miss the old me. Sadly, I do and I can't go back in time and change it.

So here I am, with my life that isn't normal and will never be normal again. Maybe one day the reminders won't be as frequent. Hopefully one day it won't disturb me as much as it does. Because it's the little reminders that make me want to shed a tear. In those moments it's all I can do to stand there with a smile on my face and tell you "Everything is OK." Inside though, I'm breaking, I'm standing in front of you and falling apart. Maybe because everybody thinks I am so "well adjusted" that no one notices. The funny thing is, I never feel well adjusted and in way that would make me normal, I'm not normal.

One of the not so fun parts about having lupus is the inability to remember much of anything. I can't tell you what I did two days ago. I have a general idea because my days pretty much seem to be the same. But I don't know if I hung out with anyone in particular or did anything special. Yesterday, I received a letter in the mail from a relative who I used to be very close to. In the letter she wrote down all of her favorite memories of me. Stuff I don't even remember! It looked as if she wrote the letter a long time ago but she never got around to sending it. I understand why, our relationship has been very tumultuous over the past few years. The letter has inspired me in a way to write down some of my memories, the stuff I remember. I figured since most people tell me about how they like the fact that I'm so real, I'd share these personal tid bits with y'all.

Memory 1:
I remember being about seven or eight years old. I was at my Grandparents house and it was probably early August. I was in the kitchen with my Grandpa, I think my Grandma and my sister were out somewhere. My Grandpa decided it would be fun if I baked a cake, by myself but of course with his supervision. In case you didn't know, I've loved cooking from a very young age, a lot of my memories revolve around cooking. My Grandpa got out a box of cake mix (yes, I cringe now because I used boxed cake mix), a mixer, the oil, eggs, bowl, spatula, and pan. I read the directions on the box twice because I didn't want to mess up the cake. I wanted to make my Grandpa proud of me. I added in the ingredients, combined everything with the mixer, and then poured it into the pan. My Grandpa put it into the oven for me, I suppose he didn't want me to get burned. I can still smell that yellow cake, as simple as it was, it produced such a sweet, enticing aroma. The scent wafted through the kitchen and eventually throughout the house. When the cake was done, my Grandpa took it out of the oven and I stood there with a huge smile on my face. He looked at me and said "You made that."

Memory 2:
Every summer my Grandparents would take my sister and I back to school shopping. We had a budget and it was up to us to choose what we wanted. I have always been frugal, I don't think there is anyone who can make a penny stretch further than me, well other than my Mom. We would go to the malls, the PX, and the other retail stores in the area. I would carefully plan out my clothing selections and determine if each piece was really worth the price. I suppose it comes from having a Mother who is a seamstress. Not only did the price matter but quality did as well. I remember if there was something really beautiful, really fancy, but I couldn't justify it, my Grandpa would. He would say "I just can't let you walk out of the store without this. It's too perfect and too beautiful to be worn by anyone else. Shh, don't tell your Grandma." Those were always his last words whenever he bought me something out of the ordinary. "Shh, don't tell your Grandma."

Memory 3:
Back in the day when I could have sugar, my Grandparents would always take me to Baskin Robbins. Or as my Grandpa called it, 31 Flavors. We would be riding in the car which always smelled brand new (my Grandpa liked new, expensive cars). He would look at my Grandma and say "Ruby, let's stop off at 31 Flavors and get some ice cream." My Grandpa would always get the German Chocolate Cake, my Grandma would get Almond Roca if it was one of the featured flavors, and I would always get something with tons of chocolate. My Grandpa would always get it in a sugar cone, not a cake cone, not a waffle cone, but a sugar cone.

Memory 4:
A long time ago when I did mission work, I had the opportunity to spend some time down in Long Beach, Mississippi. I was there helping to rebuild the area after Hurricane Katrina struck. I was working/living at a camp that was set up right after Katrina hit. On the last half of my trip, I couldn't go out in the field to work as much as I wanted to. I ended up injuring my finger big time when I was down there. It was an unfortunate roofing work incident which left my right index finger with a massive gash that probably needed stitches. But I'm kind of like a boy scout when it comes to my medical care, I'll make it work with what I got. Besides, there were no hospitals near by.

Anyway, I was working the assistance services station at the front of the camp. It's where people would come in, in hopes of receiving some sort of help. There was lots of paper work that had to be filled out, I had to know when they last received aid, where they received it from, what their FEMA number was, and of course basics like their name, address, and social security number. I had to check all of their information in the system to make sure it cleared. If it didn't clear or for some reason they didn't have their FEMA number on official FEMA letterhead paper, I couldn't give them help. There were these rules for a reason, to keep people from abusing the system. But I got pretty good at figuring out who was abusing the system and who really needed help.

A woman can barreling down the road in her pick up truck that looked like it was from the 1970's and rust was the only thing holding it together. She had a four or five year old son with her and a baby that looked like she couldn't have been older than six months. She begs me for a food box which contains three days worth of food and water, things like canned tuna, spam, boxed macaroni and cheese, electrolyte powder, powdered milk, crackers, and canned fruit and vegetables. Is it something I would want to eat? No. But when you're that hungry, that tired, and the only things you have are the possessions you carry with you, you'll take what you can get. It was desperation at it's worst. The only problem was, she didn't have her FEMA number on official FEMA letterhead paper. She had it written down on a little slip of paper that looked crumpled, torn, and like it had been to hell and back.

Legally, I couldn't give her anything, but in my heart I knew I couldn't deny her either. I could see the baby in the truck, so small in her car seat. The Mom said she had been sick and I could tell, I could see it in her pale face, her sad eyes, her weak body. And that little boy, four or five years old, he was so patient, so quiet, and so perfect. At that moment I did something which I wasn't supposed to do but in my heart I knew it was right. I told the woman to get in her truck with her kids, pull around to the side of the building, and I would help her. I was only authorized to give one food box at at time but I gave two. I threw in some extra water, electrolyte powder, and baby formula. I put it in the floor of her rusted truck and wished her luck. We said goodbye with tears in our eyes, both with gratitude in our hearts. I was thankful I was able to help and I know she was thankful she got help.

Memory 5:
It was my 21st Birthday, a Friday. I was on a church retreat to one of my favorite places in the world, Shrine Mont, which is in the mountains of Virginia. That summer I had received some of the worst news that one could ever hear in regards to their health. I was really trying hard to live my life at that point because it's what I was told to do. At the time, I wasn't expected to see my 22nd Birthday. It was a cold night in October, even for Shrine Mont. I remember at dinner there was a cake for me, I blew out the candles, and I made one wish. I had always wanted to see it snow at Shrine Mont, I thought it would be the most beautiful thing in the world. I didn't care if it was just a little bit of snow, but I wanted to see it falling from the sky. After dinner we had a little bit of a hoedown, with lots of music, lots of people, and lots of fun. In the middle of the party one of the kids comes bursting inside, screaming "IT'S SNOWING!"

My heart leaped from my chest, it was all I could do to remember to grab my coat and hat. I didn't walk, I ran outside! I stood in the middle of the field and spun around in circles with my arms out in the air whispering to myself "It's snowing, it's finally snowing." People came up to me and asked me why on earth was I so happy? I told them that my Birthday wish had come true, it was the one thing I wanted for my 21st Birthday and it actually happened. It snowed. While it didn't stick to the ground, I remember it stuck to my jacket, my hat, my gloves, and it gently tickled my face. I felt like I was in a dream, it was perfect. The one thing I wanted to happen came true, it was as if God was listening to me. He knew how badly I wanted to see snow and He made it happen.

P.S.- I'm 23 now:-)

I have more memories but it took a lot of energy to get these memories typed down. So maybe one day if y'all ever want to know more memories, leave me a comment. Of course if this blog entry was the most boring thing you have ever read, you have my apologies. It was nice being able to remember, something I have a difficult time doing.

99.9% of the time I'm a strong person, I have to be with lupus, there isn't another option. Lupus is an every day battle with me, at some point in my day it's going to affect me. I can't remember the last time I felt completely normal, like the way I used to feel before I got sick. I have my good days which I am extremely thankful for. I have my bad days which I push through and move on from. Then I have my really bad days where I just don't care. I have to know when to pick my battles and today I don't feel like battling. Today I feel like saying "Lupus, you win, I can't fight you right now."

The past weeks have been extremely difficult on me, physically, emotionally, and mentally. I've physically forced myself to do too many things because it has felt like the right thing. I'm emotionally drained from the past few weeks events. Mentally, I feel as if I'm not capable of doing anything because someone is always on my case. I'm constantly holding it together and at the same time second guessing myself (thanks to people who do it for me). All while trying to be a rock for everybody else to hold onto. I feel like breaking, I am physically, emotionally, mentally depleted.

I can't be a fighter all the time, I can't always be strong. Sometimes I just need the burden to be lifted, the pain to go away, the exhaustion to cease, and the games people play with my mind to end. Sometimes I need to stop fighting for a few days. If that makes me weak, so be it. But at some point I think we all have to be weak, in a way it gives our whole body a chance to recharge. So if I sound tired, really, really tired the next few days, it's because I am. If I look like I'm in pain and I might cry, it's because I am. If I appear to have an "I don't give a shit" attitude, it's because that's how I feel. Right now I'm having a hard enough time caring about myself.

I know for the next few days I might seem closed off and shut down. But I don't have a choice at this point, I have no energy to do anything else but shut down. I don't want advice, opinions, sympathy, or any form of nagging. What I need is for people to understand what I need from you. If I need space from one person and closeness from another, it's not because I love one person more than the other. I simply need different things from different people. It's all a different form of love. I'm doing it for my sake and for yours.

Please know that I am not quitting, I just can't fight right now. All I can do is exist.

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.