On The Lupie Side Of The Street

I have had the week from hell. When I mean hell, I mean H-E-L-L. It has been absolutely horrific, one thing right after another. I've been having pretty severe chest pains for a bit of time now and I finally went to the doctor for it. If you didn't know, I'm very much a grin and bear it person. Turns out my heart is a tad bit swollen, I can totally thank lupus for that one. I also got x-ray results back today and I am now the proud owner of a lovely case of costochondritis. Again, thank you lupus.

To make matters worse, in the hustle and bustle of running around the hospital getting tests done, I lost my high school class ring. You're probably thinking "A high school class ring, big deal?" I wear very few pieces of jewelry and I've worn this one ring every day since high school. I loved my ring and without it, I feel like a horrible person. I cannot believe I was stupid enough to lose one of my favorite pieces of jewelry. I could get it replaced but it won't be the same. This ring has gone on so many mission trips, it's been through so many hours of community service, it's gone to Europe! It's been through first love, lost love, and there's no way this could be love. I feel like I lost a little piece of myself and I keep beating myself up for losing it.

But in the midst of all of this pain, I've been trying to keep my spirits up. My friend M&M was cutting my hair the other day and I was talking about a new plan. I wanted to start knitting scarves for the homeless once I had a steady source of income. My plan was to start knitting in the spring and summer, trying to knit one scarf a week. I was going to donate the scarves to be given out to homeless people so they could stay warm in the fall, winter, and early spring. I feel so sad for the homeless people on a really cold night because a lot of them have no where to go. They aren't as lucky as me, they don't have anywhere to go to warm up and take the chill off.

M&M started talking about how she wanted to tithe but she wasn't sure where she wanted to tithe to. I started listing a bunch of local organizations and charities that could definitely benefit from financial donations. Every organization I listed got shot down, finally she tells me she wants to buy my yarn. It all fell into place, every week she would give me a bit of money and I would buy the yarn and knit the scarves. It felt perfect to me, it was like a gift was being given to me. With M&M's help, I'll be able to help keep so many homeless people warm next winter. Thank you M&M for helping me make my dream possible, I couldn't do this without you.

So as much as I've had a week from hell, I'm well aware it could be much worse. On a night like tonight when it is freezing cold, I could be homeless and chilled to the bone. I could be sleeping on a bench instead of on my comfortable bed. I could be out in the bitter cold, shielding myself from the wind in an alley, but I'm in my room with my mini heater on. Sure I'm exhausted, in pain, and worn down to the bone. But every single homeless person out there tonight is exhausted, in pain, worn down to the bone, and they have to stay out in the cold. Hopefully by next winter M&M and I will be able to make the lives of homeless people a bit more bearable.

I think M&M and I desperately needed this little piece of hope, knowing that we are making a difference. Our scarves are going to change lives. While having a swollen heart and costochondritis is going to change my life, I can still do good things. I can still help others. I can still be the Erika I want to be with help from my dearest friends.

Last night I had a great conversation with my friend on the telephone. I was laying in bed, frustrated about how I felt, and how most people don't understand. When I look completely healthy and radiant, it doesn't mean that I am. It's hard enough for most of the general population to understand an auto immune disorder such as lupus. But it's even harder when most days when the person, such as me, doesn't even look sick. I tried to explain to my friend whom I'll refer to as M&M, what it really means when I tell her how I feel. When I say I feel "OK" for a healthy person it would be their version of a sick day. If I were to say "I feel sick today" for the average person, it would mean they would feel like death warmed over. Occasionally I mutter the words "I feel like death warmed over." A healthy person would have been six feet under for six months at that point.

99.9% of the time, I tell people I feel "OK." Why? Because no one wants to hear my sob story about how my joints hurt, my muscles ache, and my organs are burning. No one wants to hear about how exhausted I am but I can't sleep. Don't even get me started on everything else that is wrong. A sob story is only good for one time and I had to use mine up a long time ago. Plus if you say anything other than "I feel OK" you get asked a lot of questions. There is nothing else in the world that bothers me more than a nosy person. Most people don't ask questions because they care. They ask because they want the inside scoop, they are curious about my health, and not in the right ways. So there are lots of people on this earth, people I work with, people I go to church with, friends, family, who all think I'm "OK."

Maybe it's because I feel like I don't have a right to complain? My life could be a heck of a lot worse, it has been a heck of a lot worse. I consider what I'm going through right now as an upswing. Sad but true. If I say "I'm OK" I'm not complaining but I'm not really telling the whole truth either. There is no easy way to explain how you feel when you have lupus. There is no way to force people to understand either. Some days I don't even understand how I feel. I can go from being somewhat OK to being sicker than a three legged broke neck dog in a matter of minutes. But I don't have the right to complain, I'm healthier than I have been. There are sicker, sadder, poorer, and more alone people in this world than me. I'm lucky.

My friend M&M came up with an absolutely brilliant idea last night. I should start wearing a mood ring, it would make this whole business of telling people how I feel much easier. I wouldn't have to go through the explanations of how I'm feeling and how lupus is affecting me. I wouldn't be lying either because the color on the ring would say it all. Someone could say "How are you feeling today?" Being the amazing person that I am, I could look down at my mood ring and say "Actually, I'm feeling quite purple today." Of course I would get an odd look and a "What does that mean?" I could say "It means just that, I feel purple today." See, I'm not lying because I'm saying exactly how I feel because the mood ring is supposed to know exactly how I'm feeling.

I know it sounds goofy and odd but when you are faced with a disease that doctors have a hard time understanding, you need that sort of fun. When you have to answer the same questions and lie through your teeth because no one likes a sob story, it's time for a fresh new idea. Sometimes the only way I can get through living with this disease is by being quirky. So if wearing a mood ring will make M&M and I laugh, if it will make people puzzled, then that is what matters. Life is too short not to laugh, not to make memories with those you love. Life is too short not to find happiness in the little things. Life is too short not to be honest.

So if I say "I feel purple today" you might want to back up a few steps for the sake of your shoes.

It's a Friday night but it isn't just any Friday night, it's a special Friday night. Right now I should be dressed up, my hair should be brushed, my make up should be gorgeous, and I would be surrounded by my friends. We would be celebrating the fact that I'm turning 24 years old (not technically until this coming Tuesday). Guess what? I'm not out with my friends, I'm at home, in my room, snuggled under blankets in my bed. This is not the way today should have gone.

I felt horrible about canceling on my friends. A lot of them had to move their schedules around in order to come. I was looking forward to having all of my friends together because my Birthday celebration is the only time it happens each year. I'm not having just a lupus flare, I'm genuinely sick, feeling about as good as a soggy, moldy Pop-Tart left in a kid's lunch box over summer vacation. After I sent out text messages and emails, I got a reply back from each person. Here are some of the things they said.

"It's ok sweetie. Get well. :-)"

"Do you need anything?"

"O god that bites. I hope u feel better soon!"

"*muah* its otay it just means u get to celebrate in a week or so! :-P Feel better, <3 you! Happy birfthday!"

"If there's anything I can do let me know."

"U being healthy is all that matters. Seriously. When you reschedule, let me know and I will be off:-)"

"That sucks! Hope you feel better soon!"

"We'll all understand. We're all MORE interested in seeing you better than in seeing you 2night. :)"

In that moment, I was reminded of a passage that I had recently read in a book.

"...there are two types of friends in the world, those who inspire you all that is great and good and those who'd prefer to get right down on their haunches and help out with the mud pies..."
~Julie Powell, Julie and Julia

I'm lucky, I don't have to choose which friends inspire me and which ones help me out with the mud pies. My closest friends do both for me! Today when they told me to feel better, I actually felt better for a minute or two afterward. When they asked if I needed anything, I knew that they would go to the ends of the earth for me. So while I'm missing my own Birthday party, laying in bed, trying really hard to get better, my friends are still supporting me all the way. To them, I'm more than a person who has a chronic illness, I'm their Erika. They love me for me and no matter what they will always stand by my side.

So, my close friends who had to miss out on an Erika celebration, please know this. I love you, I love each and every one of you. I am so unbelievably lucky to have you in my life. Very few people have as many amazing friends as I do. Every day you inspire me to be the best Erika I know I can be. Every day, whether you realize it or not, you help me. I know that we will always have each others backs. Nothing will ever stand in the way of our friendship because we love each other too much. Thank you for being so understanding over the years, I know it hasn't been easy for any of you. I hope one day I can give back as much as you give to me. You are each two types of friends in one, but remaining unique with qualities that I could only dream of having. You all are truly the best friends that everyone wishes they could have.

This afternoon I was hanging out with a really close friend. While I haven't known her for a very long period of time, only four months or so, I feel like I've known her forever. We were sitting outside in the shade in front of a Starbucks enjoying our iced green teas. At some point during our conversation the topic of my health came up. She made two comments that really stuck with me throughout the evening.

"I didn't realize how sick you really are."

And.

"I don't know how you even manage to leave the house?"

Most people judge my sickness based on my outward appearance. Some days I do look physically ill, some people go as far to say that my skin takes on a greenish hue. Occasionally if I'm not wearing makeup, I'll notice how dark my skin gets around my eyes. My face will be pale and my lips will have no color. But most days I don't physically look sick, I put on makeup, I'll put a smile on my face, and no one would know unless I told them. Appearances can be deceiving, I may look like your typical 23 year old on the outside but on the inside I'm not. My body is older than my actual age. My muscles, joints, organs, and soft tissues are more damaged than someone who is in their 60's. People forget how destructive auto-immune disorders can be. Even with medication it doesn't control all of the horrible effects, it doesn't halt the progression of the disease. It's like putting a band-aid on a penetration wound, it doesn't do the job.

Once in a while I forget how sick I am because sometimes I feel as OK as I'm going to get. Sometimes I don't feel sick to my stomach, my muscles don't burn, my joints don't ache, my organs don't hurt, my head doesn't pound, my brain isn't in a fog, I'm not exhausted, and I feel as if I could conquer the world. Once in a while I can have a full day and forget that my body is as messed up as it is. I love those days, I cherish those days, those days give me a reason to keep going, not to up and quit because I am so tired of trying when life barely gives me a break. But I know that I can never have a break from life, if I break from life, that's it, it's over. I wouldn't have the strength to come back, I would fade away and be lost forever. So those good days make me want to push on through all of the pain and heartache my body causes me. They are little pieces of hope that I carefully cradle in my hand as if it were a butterfly, being careful not to hurt the wings. Eventually that hope has to fly away but I never forget the feeling it leaves in my heart.

When it comes to leaving the house, some days I don't. Some days it's all I can do to get out of bed and go downstairs to get a bottle of water. Honestly, some days I'm barely alive and I'm well aware of it, I'm hanging on by that little piece of hope. But not every day is absolutely horrific, most days are bad but I choose not to show it. I have to put on my brave face, not just for others but also for myself. Sometimes I have to fake it until I make it, I convince myself that if I look and act OK that I will eventually feel OK. Some days I have to leave the house and face the world with an open heart, no matter how much it pains me. If I don't leave the house I would be letting lupus win, I would be saying "You know what? You own me, you have imprisoned me." Lupus doesn't own me, I own me, I make the decisions and so no matter how scary life gets, I have to keep going. I have to step outside, face each day, and convince myself that I will be OK even though I'm well aware at the end of the day I may not be. This is my life, I can't change it, and the only choice I give myself is to manage it all to the best of my ability.

A lot of people think I'm extraordinarily brave because of this. I'm not, I'm no braver than any of you reading this. I'm sick but I am also lucky enough to have moments where I completely forget how screwed up my body is. I face a lot of daunting situations and my life is full of what if's? But it's a life, a life that a couple of years ago I was pretty sure that I wasn't going to have. When faced with a life that isn't exactly picture perfect all you can do is stand up and fight for each day. It doesn't make me brave, it makes me just like you. We all fight for each day, some of us in different ways than others. But we all have to fight in a way that is difficult for us. Bravery isn't based on the difficulty of the challenge we are trying to overcome. It's about reaching inside of yourself and despite being scared to death, you push on. You fight with all of your strength and even when you want to quit, you make that defining choice to keep living.

So no matter how sick I am, I'm going to be brave. I'm going to wake up each day and face the world as best as I can. If all I can do is make it down the stairs and up again, so be it because it was my personal best. If I have the ability to make it out of the house, I will. And if I'm really lucky, I'll forget for a moment how sick I really am. With a little hope and bravery I'll keep moving on. That is how I'll do it.

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.

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.

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.

I had a fabulous day yesterday, a much needed break. I spent the day hanging out with my sister Lindsay and our friend Michelle. We grilled out munching on delicious kabobs, attempted to swim even though it was way too cold, and sat outside constantly changing the conversation. I was then introduced to a lovely game on Play Station 3, Little Big Planet. At first I didn't understand the concept of the game but once I played, it all sort of made sense. Gaming time was much needed and appreciated, thanks Michelle! When I realized the price of LBP and the PS3 today I realized it is way out of my reach. Is the game fun? Of course! But can I justify the price? Nope. Not when I've got loads of stuff in me that needs to be fixed.

I'm still job hunting, calling places, sending in resumes. Whenever I sort of get a lead I get really excited. But when it doesn't work out, it just sends me down in the pit of despair. Do I stay there for very long? No. It just makes me temporarily feel like I'm not good enough and I can't do anything right. I'm sure every other unemployed person on the face of the earth feels the same way. Even though I try not to stay "down" for very long, it still affects me time after time.

Currently I'm debating on calling the doctor. Even though I was wearing sunscreen yesterday and I was in the shade, the sun really messed with me. I'm beginning to flare and I have some other issues that are not helping. But for the past few weeks I've had a sore throat that hasn't been excruciating, it just hasn't gone away. Now though it's become difficult to swallow, I feel like there is a small ball stuck in the back of my throat. I've had this feeling before and it's always gone away. It doesn't happen all the time either. So knowing my luck by the time I saw a doctor it wouldn't be bothering me at that moment. That's always my luck. I guess if it is still around next week I'll make an appointment. For now I'll grin and bear it.

I wish I had something fabulous and inspirational to say but I'm just exhausted. I feel like my brain has been fried with a side of eggs sunny side up (great mental image). I've been decoupaging a lot here lately when I haven't been job hunting. It's one of those mindless activities that is fun once you get into it. I've unfortunately run out of ordinary household objects to decoupage. I think there might be an old peanut butter jar somewhere? I haven't been exercising a lot here either. As much as I love walking, I just haven't been motivated. It's hard to do something especially when you aren't really seeing results. I guess I'll force myself to do it today if it doesn't start raining.

So here's what I need:

1. The opportunity to change people's lives for the better.
   
2. A job.
3. A really nice dentist willing to donate free dental work (my mouth is a wreck, thanks genetics and Lupus, perfect oral hygiene has gotten me nowhere). Heck, I don't even consume sugar or eat foods that can cause erosion!
   
4. A smidge more energy.
5. This feeling of "something bad's gonna happen" to get rid of itself.

That's all for now! I think I'll feel better with a little bit of hope and a lot of rest.

I had a great morning today. I have officially met my first person, in real life, who has lupus. I know many, many people online who have it. But it felt amazing to meet someone in person who I share a connection with. Not only do we share the common bond of lupus, but we also understand each other. We understand the weird twitches that we both get and yet other people stare at us thinking "Are you ok?" We know about the pain and swelling in the joints that lupus causes. We get those nights where you just can't sleep, no matter how hard you try. How all of a sudden you get boiling hot yet on the outside you feel cool as a cucumber. We get the headaches that feel your head is going to implode and Tylenol just doesn't cut it.

We understand each other. As simple as that sounds, it is an amazing feeling. I had the opportunity to meet one of the strongest people I have ever met. Despite all of her chronic conditions, she still keeps going. She loves her family, her friends, and even on the hardest days, she still loves her self. I admire her for that because on my hardest days, I sometimes don't love myself. Maybe that's why I get so grumpy on my worst days? Because I don't like who I am and what lupus has caused me to become? Now don't get me wrong, on most days I like who I am, I love who I am, most parts of course. I love my personality, I love my voice, I love that when I hear music I see music too. I love my eyes and how expressive they can be. I love my freakishly long tongue that I will stick out at the most random moments just to make others laugh. I love a lot of things about me on my good days. But on my bad days, I just don't see much to love.

Despite all of those things, I'm ok with that. I'm ok with the fact that I'm going to have my ups and downs as I live with lupus for the rest of my life. I'm ok with the fact that I'm at risk for developing other auto-immune disorders. I'm ok with the fact that my kidneys (Mr. and Mrs. Piddles as my sister and I call them) could give out when I least expect it. I'm ok with the fact that as I go through life, I'll be forced to take more and more prescriptions to keep going. Why am I ok with this? Because I have my life, a life filled with family who loves and friends who care. And a strong woman who gives me something to hope for, something to wish for, something to live for. You know who you are, thank you. In the last few days you have given me encouragement that I never could have foreseen. Thank you. I hope you too are ok with that.

Sorry for my absence here lately! It's been spring break around the house and I've been quite busy. I'm still exercising, I'm walking an average of 2.5-3 miles a day. I know that it's not a lot but I'm trying and at least I'm getting a routine down. Today I walked 2.57 miles and then I also got on the stationary bike and biked a whopping one mile. Again, it's not a lot, I had to stop every .05 miles so my muscles would stop cramping. It's hard to think a few years ago I was so in shape and riding a bicycle for one mile would have been nothing!

I'm going to a wedding in a week and I have had the hardest time trying to find a dress to wear to it. I didn't really like anything I saw in the stores and I really didn't have much in my closet. So I did the unthinkable for me, I went to the fabric store with my Mom. I hate going to the fabric store because my Mom takes forever. Even if she hasn't found anything she likes the first loop around the store, she will loop back around again. But I figured the only way to find the perfect outfit was to have my Mom make it, it pays to have a seamstress in the family. I started looking at pattern books and I came across the perfect pattern. It reminded me on Audrey Hepburn, it was vintage, and it just said "Erika." Apparently my Mom had been looking at this pattern for me for the past two years and she always thought it would be the perfect dress for me.

As we looked around the fabric store, we couldn't find any fabric that would be appropriate. I wanted a fabric that would be a weight that would be comfortable all year round. I also wanted a color that would work for all seasons. I didn't want anything sparkly or that looked like it belonged on a prom dress. I wanted a pale silver color, a dull satin, something like the fabric my 2003 prom dress was made out of.
Unfortunately the fabric store we were at didn't have anything like it. So we decided to go across the street to the other fabric store where we found the silver fabric a few years ago. Lo and behold they had it, along with the pattern we wanted, and it was on sale! Fabric, pattern, and a new spool of thread cost about $28. If I had to go out and buy the dress in the store, it would probably cost at least $60. But that includes the cost of labor and inflation. In one week, I will have the dress that the woman in the middle of the pattern is wearing. I like the middle dress because the front will lay flatter and provide me with more coverage than the dress that has the two straps across the front. I do like the dress with the two straps but with my figure, it probably wouldn't work to my advantage. I just hope I'm not over dressed for the wedding!

Not much to update on medically. Of course I have had increased joint and muscle pain since I have started the exercise routine. I've had more fatigue which is also to be expected. I just hope it evens out sooner or later! I'm really focused on increasing my strength and endurance. With strength and endurance comes more energy, with energy comes the ability to do a lot of great things. I've got a rheumy appointment the first week in May. That means I get to get lab work done about a week before the appointment. I'll probably get it done in the beginning of the last week in April just to give Quest a while to process it. I've figured out that Quest is much quicker than Lab Corp! Plus when I've gone to Quest, it's been a lot less crowded and the wait has been minimal.

Yesterday I hung out with Michele and we had another paint party! We went to Starbucks because there was a painting there she wanted to copy. I had a painting I needed to finish anyways and it's always more fun to paint with a friend. Last night I also went to the Maundy Thursday service and I saw my Godmother. I told her that I switched internists and she seemed a bit on the concerned side. Of course she had a million questions but it's only because she loves me. I also got the semi compliment of "It's hard to believe that your sick!" Every time I hear that I just want to say "Really? Because I feel like barfing on your shoes." I'm glad I don't look sick but what does sick look like in the first place?

Oh and here's the painting I finished yesterday. If you want it, let me know! It's a 4X4 inch painting and I can ship it anywhere in the U.S. All you have to do is name your price, chances are, I probably won't turn it down! Unless you are offering 50 cents. I know my paintings are quite elementary because I've never had any sort of professional lesson. But I think they add a lot of joy to life!

I think today is going to go down in the books as my best day ever. What qualifies as the best day ever for a person varies with the person. A person's best day ever could be the day they got married, or the day they had their first child. The best day could be the day they graduated from college or the day they saw their grandchild graduate from high school. But today, April 2nd, 2009, I think will go down as the best day ever for me. The video blog below explains it all.

I'm sorry I didn't post yesterday, I've been too busy eating. Yes, eating. It is like I have fallen in love with food all over again. Everything sounds good, looks good, and tastes even better. It's as if my taste buds are alive again! My stomach is actually allowing me to digest food. I don't feel like I have a lead brick in my stomach for three days. I feel hungry in a matter of hours after I eat. For those of you who don't understand, I haven't felt hungry in so long that I forgot what hunger felt like. That's how crazy my stomach has acted in the past.

Today was a good day, a very good day. I got to hang out with an awesome friend, we went to Ashland Coffee and Tea. It's one of our favorite hang outs, here's why. It's hardly ever crowded on a week day. The prices are decent, they have a great selection of teas, they have foods that are "safe" for me to eat, and they have free internet. Today I did an art project with a friend. She is moving into a new house and I thought she could use some art for her new digs. So we painted this crazy flower picture together. I think it turned out fairly well considering my flowers look like something out of Dr. Seuss. I'm not too good at being realistic when it comes to art. We also had a fabulous time listening in on people's conversations and quietly whispering about what they were saying. Yes, that's wrong, but come on, it's just too darn fun to pass up!

This evening I was catching up on some ER episodes from the 15th and final season. It's gotten so romantic and mushy, I'm not a romantic person. But watching stuff where people are in love, it makes me want to be in love too. It makes me wish I could find that special someone. But the realistic side of me soon kicks in and I realize I will never, ever be able to be in a relationship.

First of all, no one really understands lupus, I have a hard time understanding it. If I have a hard time comprehending what it does to my body, how am I supposed to make someone else understand? Is this someone going to be able to tolerate me getting sick? Will they be there to hold my hand when I'm so nauseated I cannot move from the bathroom floor? Will they not panic when my heart races to 150 bpm and I feel dizzy, out of breath, and my chest is going to just crumble in my hands? How will they manage on one of my bad days when I can hardly take care of myself?

Don't even get me started on the thought of insurance and the prospect of children. I have no idea what I will do for insurance once I turn 25. And children, well, whoever I'm with can throw that idea right out the window. I'll never be able to adopt either, which is what I would love to do, but with my medical history? A judge would have to be out of their mind to grant me the rights to adopt a child. I would never adopt if I wasn't physically and financially stable. I want to adopt a teenager, someone who is about to be shoved out of the system. I want to get them back in school, I want them to have a stable home life. I want them to be able to have friends, go to the movies, hang out at the mall. I want to expose them to the arts, and not just what we think is "art." Just because it doesn't hang in a museum doesn't mean it's not art. Anything can be art if you look at it with an open mind. I want to give them the opportunity to go to college and succeed in life. Most of all, I want to make sure they know they are loved and no matter what, they will always have me in their life. Will any of that happen? Realistically? No.

So yes, I wish it could all be simpler, but it's not. I don't think I'll ever truly be able to lead a completely normal life. I mean how normal is it to have to brief your friends on what to do in case of an emergency? It's not very normal to have your entire medical history, a list of all your doctors, and every single medication you take loaded onto your cell phone.

I'm 23 years old and instead of running around with a job, I'm at home calling doctors and making copies of records. I'm hoping to get back into the work world soon. I've just got to work with a place that will be somewhat understanding and flexible. I don't want to work for a large company either, they are less flexible and I will be another dispensable employee. I don't want disability because I'm capable of doing good work, I've just got to find someone willing to give me a chance. That's what frustrates me, I'm not looking for a hand out, I'm not looking for someone to hand me something I don't deserve. I just need someone to help me get on my feet, just a little lift, I'm willing to work for it. I want to work for it, I need to work for it, I need to know that I can be a good person, a productive member of society. I need to know that this illness won't hold me back in all aspects of my life, that I can still be part of the person I dream to be.

Here's a photo of the crazy art I did with my friend today. I never said we were good, but we surely have fun doing it!