On The Lupie Side Of The Street

This past week has been incredibly difficult. I have been faced with insurance challenges, health troubles, and a streak of bad luck. This week has made me cry, scream, hate myself, hate the world, and question the entire way of the universe. I sat on my floor, alone, curled up in a ball yelling to absolutely no one "I DON'T UNDERSTAND! I JUST CANNOT UNDERSTAND ANYMORE!" I feel like tears have been constantly streaming down my face, I'm having a hard time controlling my emotions.

I feel so frightened, so alone, and as much as I hate to say this, so hopeless. My world has been turned upside down and shaken like a snow globe. Nothing is as it was and nothing will ever be as I think it should be. Just as I think I'm getting a small bit of my life together, it's gets snatched away from me, smashed, and I'm left with a few crumbled bits. I keep thinking to myself "What happened to my life?"

I'm laying here in bed bruised emotionally and physically. The thought that has been rolling through my mind today is "What's the point?" I'm being told to gain weight because I'm severely underweight. What's the point? I mean come November 28th, 2010 my insurance might be running out. Without my pills, lupus will ravage my body, my organs won't hold up. What's the point of torturing my digestive tract in order to gain weight? What's the point of taking all of these pills now if I won't have them come November? What's the point of me having to try to breathe on my nights when I am so sick and in so much pain, I can hardly speak? Why can't I quit now?

Please, someone tell me, what is the point?

I am exhausted all the time and I am running out of the strength. What is the point? I feel so alone all the time and I just wish someone could swoop in and fix all of this. I never thought I would be sick, for the rest of my life. I know I have it lucky, there are people in this world who have it so much more worse than me. Some people don't have a roof over their head or food to eat. Others can't survive without machines to move blood and oxygen through their body. I know I am lucky. But now, RIGHT NOW, my life feels beyond difficult.

I feel as if I cannot go on. I need hope.

Some people have asked me this week what they can do to help. I told people to pray, to pray for those who have it worse than me. Because their spirits may be gone, for good. But the more I think about it and I hate myself for saying this, I need money. It's expensive to be me, anyone with any sort of chronic illness understands. My life is not spent buying new clothes or expensive electronics. It's spent trying to figure out how to pay for the basic necessities I need to survive. I am not asking for a hand out, I am not able to do that yet. I do make candy though, you may have seen me as @Econfections on Twitter. If you live in the metro Richmond, Virginia area and would like hand made candy, please contact me either on my blog, Twitter, or at Econfections@gmail.com

You have no idea how badly I hate myself for putting this advertisement up about my candy. But making candy once a week gives me a little bit of hope. It's the one thing I know how to do, it does wear me out, but it makes me a little happy. When you buy my candy, it helps to pay for my basic needs that keep me alive for another week. For now, it's the one thing that gives me the smallest bit of hope.

I'm losing strength, I'm questioning myself, I need help, and I need hope. Please help me find my hope again. I need to know that there is a point behind this misery

The first question I always get asked when people get to know me is "What is Lupus?" The second question I get asked after I explain myself is "How do you go on?" How do I go on? It's a question I ask myself every single day that I live here on this earth. How am I supposed to go on when my body feels like it cannot? How do I manage to live another day when my heart says "It's not worth it." I will tell you a little secret, I don't live for myself.

I don't choose to go on every single day for myself. On my bad days when I can't out of bed, when all I can do is watch TV and whimper to myself, I don't want to be here. I am not an active participant in life. On the nights when I am alone, so exhausted I can't sleep, in so much pain the thought of switching sides seems impossible. I sometimes wish I were dead. But on those days and nights when I feel I cannot go on, I think about you. I think about my Mom, my best friends, my Twitter followers, and complete strangers. I think about a person and I hold their love in my heart. The love allows me to carry on through the pain, the exhaustion, and the cruelty of my illness.

Today is the six year anniversary of my Grandpa's death. On Wednesday, April 28th, 2004, he passed away from diabetes complications, gastric paresis, and pneumonia. He was sick for a good two years but I always felt in my heart that he would pull through. He never did. But before he got sick, he could never express to me enough how proud he was of me. My Grandpa put me on a pedestal that in his eyes, no one else could reach. I remember sitting at dinner with him and his friends, every other sentence out of his mouth would be a compliment about me. I think that man loved me more than he loved himself. At the time I was able to make all of his hopes and dreams for me come true.

Sadly, life for me has not turned out in the way he would have wanted for me. I am not in the military. I am not protecting our country in the same way that he did. I don't wake up in the morning and put on a uniform like he did for so many years of his life. I do know that my Grandpa would be so very proud of me if he could see me today. I may not be the cookie cutter image of what he wanted me to be, but I am me. I am living today. If for nothing else, he would be proud of me for living. When the odds are stacked against me, I choose to go on even if it is for others.

If my Grandpa were here today, he would be sitting with his friends at dinner and he would say "My granddaughter Erika, she goes on no matter what. She stands tall when her illness tells her she can't. She lives when doctors tell her she won't. She never fails to make me proud." I know in my heart that is exactly what he would say.

So in honor of his life, on April 28th, 2010, I am choosing to go on for my Grandpa. He is the one who taught me how to be strong, to go after my goals. Trying to go on every day is my goal and it takes more strength than you can imagine. Thank you Grandpa for instilling those characteristics in me. I always carry your love in my heart. My soul never forgets you. I will forever miss you, Grandpa.

I'm not one who watches any of these late night commentary sort of shows found on Comedy Central. Stephen Colbert, Jon Stewart and the like really don't interest me. They are among the hundreds of commentators out there who really only let off steam. Sure, some parts of the general population find their shows to be amusing. I on the other hand, do not.

Last night Twitter was all a buzz because on "The Daily Show" with Jon Stewart, Stewart called Fox news "The Lupus of news." I did not see the show live but this morning I found the show online and watched that particular segment. Really Stewart? The Lupus of news? You just used a medical condition that 99% of America has no real idea what it is. "Lupus? Oh that's just one of those weird made up diseases, it's not real." Stewart, I can promise you that a lot of people were having that exact thought.

What hurt me the most is that you used Lupus as a punchline to make your point. People on Twitter thought you were "genius." Genius is something you definitely are not. Anybody can make a low blow, even I can do that and I'm not considered a genius by the folks on Twitter.

Now some people thought I was taking it too personally because I went on a rage last night on Twitter. No, I was not taking it too personally. But notice how Stewart chose Lupus as his punch line. Why not Down's Syndrome? Why not Parkinson's Disease? Oh yeah, because his behind would have gotten handed to him by the entire world. He made it seem OK to poke fun at Lupus though. Well listen up world, IT'S NOT OK!

On Twitter, my Lupus friends and I make a lot of fun about Lupus. But we live with this cruel disease each and every day of our life. We take pills in order to survive. Pills that aren't actually created to treat Lupus, they were meant to treat other diseases. We know there is no cure and the chance of remission is slim. We are aware that in a split second Lupus can turn on us and literally shred our bodies to pieces. It is a serious and deadly disease that is widely misunderstood. But sometimes we have to make a joke in order to survive through the pain, the suffering, the agony.

You, Stewart appear to be ignorant about Lupus so you do not get to crack a joke about it. Until you take pills, get shots, and sit through infusions so you can live a difficult life, you don't get to make a joke. Until you have to live through each day with no energy, but you're expected to function like everyone else, you don't get to make a joke. Until you cry yourself to sleep at night from pain, you don't get to make a joke. Until you are faced with the signs of muscle, bone, and organ damage, you do not get to make a joke.

Stewart, you could NEVER survive a day in my shoes. By 9 AM you would be sticking a pistol in your mouth trying to commit suicide. You will never have the courage that us "Lupies" have. You will never have our strength, our perseverance, all you will ever have are your jokes. Eventually people will find you to be out of date and no longer funny. But us Lupies, our courage will live on forever. Unlike your commentary and jokes, courage is never forgotten.

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.

I haven't always been sick, I used to be a healthy, happy, and vibrant girl. I felt like I was a good person, that I was doing the right things, that I was who I was supposed to be. But life changes, it moves on, and it took me along even though I protested. I changed and I didn't have a choice in the matter. My body changed and yet my spirit screamed "No! Stop! Just let me be the old Erika for another day!" But my body didn't listen to me, it pushed on, pulling me through what felt like the depths of hell. My spirit wanted to turn around, to go back, it wanted to live the life it knew and loved. It was a fight between my body and my spirit, to this day it's still a power struggle.

So here I am today with a body that doesn't feel familiar to me and a spirit that feels trapped. Most days I feel like less of a person than everyone else. I can't do everything in one day that everyone else can. Even if I do manage to accomplish a couple of things, I get extremely tired and I have to rest. Everyone my age is out of college, with full time jobs, having their own places, and being adults. Yet here I am at home because I had to move out of my apartment. I'm living in my old bedroom and I'm almost 24 years old. I don't have full time employment, I barely have part time because of this economy. All of these things make me feel like less of a person, like I'm not good enough.

Having a chronic illness will do that to you, it beats you down to the point where you feel like you are nothing. It doesn't help when people don't understand and constantly defending yourself gets really old, really quick. It's frustrating when your body feels so much older than your actual age. I have days where it takes everything I have to get out of bed, to eat a couple of crackers, and to have a sip of water. It makes me feel like less of a person because I never used to be like this. I used to have an endless supply of energy and nothing would stop me from doing anything I had my heart set on doing. Yet these days even if my heart is set on doing something, my body usually stops me.

My birthday is quickly approaching and the one thing I truly want, I can't have. I wish I wasn't sick. I wish my body wasn't constantly trying to self destruct. I wish I could feel healthy for more than a couple days at a time. I wish I had more strength and energy. I wish I could live the life of the old Erika because then my spirit would be content. But instead I'm living at home, trying to find the strength to do the most basic things. At the end of the day I end up beating myself up for not being able to do everything that I had wanted to do. And whatever I did the day before, I always end up paying for it the next day. I go to bed thinking "What happened to me? How do I get myself back?" For now, I don't know. I don't know how to get myself out of this hole I'm stuck in. I know in reality I'll never quite get out, I'll always be sick, I'll never feel healthy for very long at all. I'll never live the life that I used to.

I wish I could be more to myself and to the world.

I love the fall and winter and I know it's coming when the morning air gets a chill. When the leaves change from their lush green to oranges, reds, and yellows that paint the trees. I know my favorite times of year are coming when I see pumpkins, turkeys, and Christmas trees all at once. I get so excited for October because my Birthday is at the end of the month. I get excited for November because I officially start the Christmas season on Thanksgiving day. Nothing makes me happier than Christmas, it fills my heart with such joy that I can hardly contain it. I look forward to January because it's a new year, another year for me to experience amazing new things. I love February because there is always the chance for a bit of snow. But what I don't like about fall and winter is the fact that I can get sick, really sick, one foot in the grave sick.

This year I am particularly anxious about the fall and winter. Not only do I have to worry about the seasonal influenza which has tried to kill me before, this year I have to worry about H1N1. Now I'm sure most of you are saying "Oh go ahead and get the H1N1 vaccine." Well honestly, I'm apprehensive about it all. The first round of vaccines are the mist, which contain the live virus. The second and third rounds will be in the form of a shot and they will not contain the live virus. I know the CDC is saying that the vaccine is being tested to the same standards as the seasonal influenza vaccine, but that doesn't set my mind at ease. Not knowing the short or long term side affects of this drug and how it could affect all of my preexisting conditions scares me. I know it's supposed to be safe but I think most of the testing is meant for your average child or adult, not someone who is immunocompromised.

I also have to think about what would happen if I don't get the vaccine. I know I am at major risk of getting the H1N1 virus if I don't get the vaccine. I am well aware that more than likely it will be the end of me, no matter how hard I fight. I don't want to die, I have so much life left in me and I need to share it with the world. I need to go out and do big and small things that will impact lives of others in ways I cannot currently imagine. I can't do that if I'm dead. I feel like I am being selfish by not wanting to get the vaccine. Because I also feel the vaccine could make my lupus and everything else, worse. I'm afraid I could have a horrible reaction that in fact could be deadly. I'm afraid of the side effects that could happen in a week, month, year, and five years. I don't want to be one of the first people with lupus to get the vaccine. I also have to remember that every lupus case is different and therefore I can't depend on how other people react to it either.

I feel stuck between a rock and a hard place. The fall and winter are my favorite times of year. But they also seem to be the times where I have to stare death straight in the eyes and say "Step off!" So while I have my Birthday, Halloween, Thanksgiving, Christmas, New Years, and snow days to look forward to, I also have to anticipate all the illnesses that come along. I'm scared, I don't like to admit when I'm scared, but I'm scared. I'm on the verge of tears knowing that in a couple of weeks I'm going to have to make one of the most important decisions of my life. Because this decision could definitely impact my life in ways I don't want to imagine. I know it's wrong of me to think this but I am too young. I'm too young to have to decide between a vaccine or a virus, especially when both could have such damaging effects. I feel like I can't win, I sound immature but I feel like I can't do this.

My life is going to change whether I want it to or not. All because of a virus and a vaccine. And it absolutely terrifies me.

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.

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.

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.

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.

I hate my body. I hate, hate, hate, hate, hate, hate, HATE myself. Everyone tells me "You're lucky to be alive." On days like this, I don't care if I'm alive or not. I hate the fact that I have days that I really look forward to, like a special occasion. It's on those days that my body has to screw up, act up, and be an all around pain. It's on those days that if anything can go wrong, it will go wrong, forcing me to have to cancel my plans. I hate my body for doing this to me because it used to be normal. Believe it or not, a long time ago, I used to not be sick and I remember those days. I remember what it felt like to go through an entire day, not feeling pain or being sick to my stomach. I remember what it was like to not have a full body ache where I feel like I can't think or put one foot in front of the other. I just want to be able to do what I used to do but I can't because I have the world's stupidest body.

What makes matters worse is when people talk to me like I'm three years old. When someone says "Are you sure you feel like going?" It makes me second guess myself, it makes me think that I actually cannot do something. Words are powerful, they affect people physically, mentally, and emotionally. When someone talks to me like I'm three, it affects all aspects of my being. I know I have the memory of a gold fish. I know I look like I'm 12 years old. I know that most days I feel dirt and on my really bad days I feel worse than most people will ever feel. But what makes matters worse is when people talk down to me. If you know me and talk to me, don't talk down to me. I will never, ever talk down to you so please treat me with the same amount of respect. I am not a child, I am a full grown adult who unfortunately lives with illnesses that restrict my life. But these illness do not make me mentally incompetent. To exacerbate the situation, people get mad at me when I get an attitude about it. Well, excuse me but I guess that makes me a toddler who talks back!

I know I sound like a whining brat right now. I just wanted to go to Super Target so bad. I didn't have any money to spend there either. I just wanted to hang out with my sister and our friend Michelle. I think Michelle is tons of fun, she lets me come over and play video games that I don't have. She talks to me about cooking, how cool is that?! I was so looking forward to seeing this amazing Super Target that I heard so much about. I was wondering if it was maybe two stories? I was wondering if it carried more things than the normal Target that is in my area? I was so curious and excited and then my body had to go and act stupid. What made it worse was being talked down to. I might have been able to go if I had just been talked to like an adult. Maybe I don't deserve to be talked to like I'm actually the age that I am? Who knows, it's one of those things I'll never understand.

I guess it's a good thing that I stayed home. My stomach is killing me, I have a tickle in the back of my throat. And because my stomach is upset, I'm afraid to cough. I'm lightheaded and my head hurts. So maybe it's a good thing that I didn't go? I will spend my night here, at home, in my bedroom like I do every other night of the week. I can't go out and act my age because my body won't let me. It doesn't matter how many pills I take, I'll never be normal. I may look completely normal most days but on the inside I'm not normal. I will never be able to say I'm healthy because I live with illnesses that can be treated but never cured. I will never be the same girl I was before I got sick. My life is forever different and I just wish it could be different for better reasons than this.

So here are some new rules that I am implementing in my life. If you are someone who is in my life, LISTEN UP!

1. I'm trying to be the best person I can be. It's incredibly hard. It's much harder than you think to be me. A lot of people think my life is easy because I am sick, switch bodies with me and you'll quickly change your mind. It's hard to look and act normal especially when you feel less than normal.
2. I'm sorry that I'm sick so much but I cannot help it. If I could, I would! I hate the way I feel most days but I have to suck it up with a smile on my face. And some days, like today, I can't smile because I'm beyond sick, get over yourself and cut me some slack.
3. When you talk to me like I'm a toddler, it hurts me. It is degrading and I don't deserve to be treated like this. You may not even realize that you are treating me this way and when I point it out to you, don't act all offended. Especially when I've already pointed it out to you numerous times.
4. I don't complain unless I absolutely have to. I complain when I feel like I am at the point of no return. I complain when my life has gone to complete crap and there is nothing more I can do to fix it in a decent amount of time. I try to stay positive but it's difficult when everything around you caves in and you have no way of getting out. Every day something goes wrong with me, something that may not be able to be fixed. Or if it can be, I don't have to the resources (like money) to fix it (just ask me about my mouth that my body is attacking, seriously). Today is one of those complaining days.
   
5. You will never understand what it is like to be me. Just like I will never understand what it is like to be you. Unfortunately you do not have the ability to switch bodies with me. You don't have the power to walk in my shoes. Don't say you understand because in all honesty, you don't. So please don't try to compare your life to mine, it will never compare. Please don't say "You're sorry..." about a certain issue I'm enduring. Because 99.9% more than one thing is wrong with me at a certain time. I'm just not going to say anything about it because I don't want to be a Debbie Downer.

Well, I'm feeling like a frozen Hot Pocket which equals death. If one has ever consumed a Hot Pocket, you know what I'm talking about. If you eat a Hot Pocket, be prepared to not feel your taste buds for three days. Be ready to call out of work three hours after consuming the Hot Pocket. Buy toilet paper and Pepto Bismol along with your Hot Pocket. If you have a death wish or need to lose a few pounds before a date, eat a Hot Pocket. In case you've ever wondered what the atomic bomb would feel like in your gastro-intestinal tract, eat a Hot Pocket. I feel like I've just eaten a Hot Pocket, except I haven't because I'm not that dumb.

So... I know I went AWOL and I apologize to all of my faithful readers. It isn't that life has been busy, I simply have not felt like writing. I think that most bloggers have their own periods of absence because that is the way life works. I haven't been inspired to write, or to even create art! I've been pretty down in the dumps until recently. Drum roll please... I have a job! Now before you go jumping on your bed, hitting your head on the ceiling, and ending up with a concussion, let me tell you the deal. It's temporary and I'm a floater, I come in to work as needed. I'm working at a local business that is right down the street from where I live which is convenient for me. I'm hoping that somehow, someway I will become permanent because of my lovely work ethic. I worked my first day on Friday and I was surprised that I was able to last for 7 hours!

I've had a quote in my mind for the past few weeks. I think about it day in and day out and right now it means so much to me. "What would you do if you knew you could not fail?" This quote is by Robert H. Schuller who was an American televangelist who created the Hour of Power. Now I am not a fan of church on television, but I'm a big fan of this quote. What would I do if I knew I wouldn't fail? I would pack up shop, go down to Panama and do mission work. I would take odd jobs to make ends meet, I would then spend the rest of the time helping others. I would work at churches and schools in the area, helping the youth to become everything they can be. I would tutor, build, inspire, care, I would do it all! Now I'm not worried about failing at the mission work, but I'm worried about my health. I'm worried that my health would fail, that everything would go to pieces, and I would be too sick to stay down there.

One day though I'm going to make it back down there. I have a lot of stuff I have to get worked on first. I need to get everything fixed and under control before I take such a big risk. I can't leave the country with my life constantly changing. I need to get sealed, sewed, covered, capped, replaced, and so much more. It seems like every day something in me is falling apart or breaking, every day it's something that may not be able to be fixed. And every day I'm expected to keep going with a smile on my face when I'm facing failure. Every day a little part of me fails and I have to be chipper about it. I don't have a choice but to go on without complaining too much. Seriously, the only time I really complain about my health is on this blog.

Some days, well most days actually, I want to scream because I want life to be fair. I want to be normal, happy, healthy, I don't want my crappy genetics and auto-immune disorders. I want to be the person who can get by with a couple of Tylenol every few months. I want to be able to get by with just brushing my teeth without flossing or mouth wash. I want to be able to forget about the sun when I go outside. I want to be my age instead of feeling like I'm middle aged! I want to be normal, or at least what I think normal should be.

Y'all want some more happy news? My Dad has talked to me (or at me) a lot here lately. On Friday night when I got home from work, I got invited out to dinner with my parents which never usually happens. He talked to me in the car, at the restaurant, and on the way home. Now were the questions directed towards me? Not really, but it felt like I was able to speak up. Did I say anything of importance? No. Did I tell him how 99.9% of the time he sucks at being a Dad? Nope. I just kept my mouth shut and stayed civilized because I do everything I can to be a good daughter. Maybe he will keep up this good trend? Maybe just maybe he'll become the Dad he used to be and less of the distant man who lives in my house.

I'm really excited about tomorrow, I'm going to the Virginia Holocaust Museum. My Mom and I were supposed to go last summer but we never got around to it. I have been to the United States Holocaust Memorial Museum in Washington D.C. a couple of times. I have also visited the Dachau Concentration Camp Memorial Site in Munich, Germany. But I have never been to the museum here in Richmond, Virginia. The Holocaust fascinates me, intrigues me, it makes me want to learn more whenever I can. I have a hard time understanding how so many people could allow something like that to happen. I'm fascinated because Hitler made so many people believe in lies, in hate, in destruction, yet at the time they didn't know. They were blind to his agenda that gave so many people a false sense of hope.

I'll try to get back on the posting routine. I hope the adventures in my life will translate into interesting blogs. Thanks for reading!

Never in my wildest dreams would I have said I wanted a career in the medical field. I never would have dreamed of myself working at a doctor's office or a hospital. But I feel my experiences have changed my way of thinking. I've been seriously considering it and honestly at this point in my life, I can't see myself doing anything else. As much as I am interested in social work, I can't see myself doing it. As much as I understand world religions, I can't see myself telling others what to believe. Sure, I'm amazing when it comes to foreign languages but I just don't see myself teaching them. Maybe it's taken three years of some really tough life experiences in order to figure it out? I'm beginning to think that my time hasn't been wasted. For a while I've felt like my life has been wasted because it's taken so long to get me put back together. But maybe, just maybe that isn't true?

I'm debating between working as a radiology tech, phlebotomist, or having a job in medical administration. Of course all three I would have to go back to school for. Which I don't mind once I get a job and I have money to pay for college. I feel like this is the right career move for me. I feel like for once, I am making a choice that will lead me in the right direction. It will impact not only me but those whom I am able to help in the process. I'm not cut out to do any of the past careers I have thought I could do. But I'm fairly sure I am cut out for this. Of course I will have to wait for the excitement in my heart to die down. I need to be sure that this is what I really want before I act on it.

I had another job interview today. I won't say whether it went good or bad because honestly I don't know. Whenever I think something goes well, it turns out to never end well. If I think something went poorly, usually it ends great. Right now though, I just don't know. Also I'm worried about insurance because mine runs out when I'm 25. I can't afford private insurance on my own either. If I let my insurance lapse, I'll never be able to get insurance again with my pre-existing conditions. My Mom and I are trying to figure out if I can stay on her insurance after I'm 25 and what that entails. Would I have to be declared disabled?

In the grand scheme of lupus, mine probably isn't that bad. Does it look bad to my family and everyone else who surrounds me? Probably. I tell my rheumatologist that I am really tired but he still thinks I can work full time because I'm "peppy." Fatigue is the number one thing on my list. Then comes joint pain, then muscle pain, and toss in my cognitive dysfunctions and I'm a big bucket of fun! Well, once I get a job I'll see what I can do. If I can work, then I'll work and I will be more than happy to. But if I can't, well I can't and something will have to work out. Right now this and everything else in my life seems to be up in the air. Maybe things will work in my favor and one by one things will land in the right order. So that's what I'm hoping for.

I feel like I need a miracle after miracle after miracle. I feel bad because I know there are people who are worse off than me. Maybe I shouldn't hope but I don't have a choice anymore. All I have left is hope that waivers when the wind blows. People think I'm so strong when I'm weak. Everyone thinks my faith is amazing when it's actually quite unremarkable. Lots of people assume about me, anything ranging from the good, the bad, and the flat out ugly. And most of it probably isn't true, I'm nothing great. I'm just your average gal with some not so average problems trying to make an above life for herself.

Oh, and I can't wait till August. I won't give any specifics on that. Except I'll get to see a person whom I haven't seen in what feels like an eternity (I'm talking years). We talk often, well not really talk, but we text message each other. And life has thrown us in separate directions but for one day it will be like old times, except better. Partially because we are both older and probably not as stupid as the younger versions of ourselves. It will only be one day of my life but it will probably be the highlight of my summer. Unless of course I get a job, I get to keep my insurance without filing for disability, and my mouth gets fixed. But even then, this still might trump it all. It's funny how one person can mean the world to someone. It's even funnier that I have a person like that in my life. And you know what the funniest thing is? I don't think anything will ever come of it because life will again throw us in separate directions.

After thinking about what I wanted to write about, I finally thought of it. First of all, I don't know if anyone else out there with lupus has this problem or if it's just me. I sometimes cannot make a sentence that other people understand. Now it's not like I'm talking gibberish and putting words together that don't make sense. My Mother often looks at me like I'm an alien because she doesn't understand what I'm trying to say. And the hard thing is that I know what I want to say, it all makes sense in my head. But when I say it, apparently it doesn't make sense.

I get frustrated especially when I don't understand something. For me it can be the simplest thing ever and my brain just will not allow me to understand. I have to go over it step by step by step. Forget about going fast and furious with me when covering something basic. If you speed along and don't give me time to process I can promise you that I'm not going to get it. Despite all of this, I have the ability to pick up foreign languages in about a week or so. I see music in a way that I have a hard time explaining. But the only way I know how is it is like I am seeing an old player piano, the keys move but no one is playing it. I see that for a lot musical instruments, 99% of the time I can play what I hear (and see). I don't know how I can or why I can, it's just the way my brain works. Can I do something as simple as read music though? Not very easily.

It's so weird because I used to be a public speaker a long time ago. And I would love to get back into the whole motivational speaking thing. I suppose I would be ok because I would have a very well planned speech in front of me. But what if there were question and answers? What if my brain decides to freeze up on me like it does and I can't process the simplest of things? Am I supposed to sign "I'm sorry but my brain is not working with my mouth and whatever I say probably won't make a dearn bit of sense to you?" Most people in the audience would probably not know American Sign Language, unless I was speaking to the deaf and hard of hearing in the first place.

It always seems to be the simplest things for me. Reading and comprehending directions. Trying to explain what I don't understand. Attempting to talk about how I feel. It is the simplest of things that shuts my brain down where I sit there unable to speak because I just can't. I know all of you will say "Go to the doctor." Seriously, this doesn't happen enough for me to justify a doctor visit. Besides? How would I explain it? I would get looked at like I'm nuts and that happens enough for me. So here I am sitting here crying because I can't understand the directions I am supposed to be following tomorrow when I go to a job interview. Sometimes I just can't get it and it's so frustrating because I want to understand. It would be one thing if I couldn't understand German while playing the piano and chewing gum all at once. But no, I can't understand directions because my brain just won't let it happen. And I can't explain what I don't understand.

Who knows if this post even makes sense? I don't know right now, I'm so tried and frustrated and I'm crying because I can't understand. And my sister is texting me telling me to look stuff up on VDOT. My brain is about to blow up and I'm supposed to navigate the VDOT website? Yeah, that's a genius thought.

I need to apologize to my readers, here lately I've been down. And when I first started this blog people found my enthusiasm for life invigorating. People thought it was great that I was so bright and cheery about everything, despite what I'm going through. Most of you know that I've been going through a rough time. I'm not really depressed, I'm just so overwhelmed by life that I don't know where to start. I've been searching for jobs every single day and I feel like I'm not getting anywhere. I know I'm also not alone when it comes to finding a job. I feel that is what makes it so hard, everyone is fighting for the same jobs and yet there can only be one winner. And I certainly have not been the winner.

I also feel that the lupus has caused some of my mood changes. Apparently that can happen so in a way, it's completely normal or to be expected. I feel that I might feel better once I have a job, once I get a little bit of hope. But right now I feel kind of stuck, I don't know what to do or how to do it. I just want to lead a productive life where I'm able to help others and honestly, I don't know how to go about it. I hope once I get a job I'll be able to volunteer more because by that point, I'll have gas money to get to my destination. I know it will do everyone some good once I'm able to volunteer. If I'm still unhappy after I get a job and after I volunteer then I'll know that it's something that probably needs to be medicated.

You would think that I would be used to be sick by now? I've been sick for quite a few years and it took quite a few years to get a correct diagnosis. I don't know if ever I'll get used to feeling "under par" day in and day out? I have my good days and my bad days and I never feel quite normal like I used to. I always have a general achy feeling, like something isn't quite right and I can't put my finger on it. I'm pretty much always exhausted and I'm expected to function at a normal level. Most days I can handle it but some days I get so frustrated with others because they simply don't understand. And don't even get me started on really bad days because at that point, I probably won't be talking to anyone.

Oh and on a sort of fun note, with my Site Meter I can see where my readers are from. It's nothing specific, don't worry I don't know your names or anything like that. But I have readers from Europe and South America which I think is pretty snazzy. I of course have followers in the United States and a couple in Canada. I want to thank each and every one of you for stopping by and reading my blog. I would love to get some feedback from those of you who haven't commented. If you're shy, don't be! Even if you don't like some parts of my blog let me know why and I'll try to fix it. If you want to follow my blog it's easy to do, just scroll down while looking to the right and find "Followers." All you need is a Google account which is basically a Gmail email address. If you already have one, you're set!

If you haven't read my blog post from yesterday Hoping For Help please do. I know this may be asking for too much but I'm going to go out on a limb. If you have an email account would you considering emailing the link to your friends? These days so many junky emails get forwarded around, could you forward this for me? I know it's not a cute picture of a kitty sitting on top of a dog, or a funny story about an old married couple. But it's my life and I keep hoping that someone will be able to help. If you have Twitter or Facebook could you spread the news across there as well? I promise you that if ever any of you come to me asking for help, I will do everything in my power to help you. I know that doesn't mean very much but I'll do whatever I can to be of assistance.

I'll even make it easy for you, here's the direct link to Hoping For Help, perfect for an email: http://loverlylupieme.blogspot.com/2009/05/hoping-for-help.html
If you wanted to Tweet it or make it part of your Facebook status, here is the shortened URL:
http://bit.ly/2BiJ0c

Please, just take a minute out of your day and do this for me. The favor will be returned to you one of these days, I promise. One day I'll figure out a way to give back to every one of you. Thank you:-)

I hate a hand out, I really do. I am the type of person who would rather work hard and earn what I want instead of it being given to me. Am I grateful if someone gives me something? Of course I am! I am usually so grateful words cannot describe how I feel. I also hate asking for help, I like to believe that I can do it all on my own when I really can't. I try hard though to make it work, even if it is challenging and exhausting. But now I'm going to ask for a big, big favor.

Remember a while back when I was talking about having to put a Kia in my mouth? Well, I still sort of need to. I still need gum grafts even though insurance won't cover them. My insurance company would rather wait until I have absolutely nothing left in my mouth to fix it. I have a feeling their solution would be to give me dentures. I'm 23 years old, I am too young to have to worry about losing my teeth. I have very soft enamel and some of it has eroded away and it hasn't even been my fault I need crowns and laminates to protect my teeth. I'm not like celebrities who get laminates to have a big, pearly white smile. I need them so I can protect my teeth because my body can't work to protect itself. Between genetics and lupus I have a not so happy mouth.

My oral care routine probably beats out one that I dentist does for them self. First I use a Waterpik dental water jet on a low setting to irrigate my mouth. Then I floss to get out any sort of excess debris that the Waterpik wasn't able to get. After that, I use antiseptic mouth wash to help prevent oral diseases. As if that wasn't enough, I use a Sonicare tooth brush to do the final cleaning of my mouth. And my whole routine usually takes between 15-20 minutes. I don't do this routine just once a day, it usually happens three times a day. I have to do it after I eat, every single time. Yeah, it takes a lot of time out of my day but it's that, or lose my teeth at a really young age. I also get to go to the dentist every three months to get my teeth cleaned. People really have no idea how much lupus can affect your oral health. It has impacted mine in unbelievable ways. I have to do everything in my power to preserve my oral health because my body won't do it for me.

I don't consume sugar, acidic foods and beverages, and abrasive foods and beverages. You know what that means? I can't have coffee at Starbucks or a ginger ale when my stomach is upset. I can't eat popcorn because the kernels can cut my gums. I allowed myself to eat cake at a wedding this past spring and I felt so guilty about it. But if it's not a really special occasion, I don't get cake or ice cream like every one else. You have no idea how much sugar is in stuff until you look at the labels. That makes my diet pretty limited. And I have to do it all because my mouth is in shambles at the lovely age of 23. The sad thing is, no matter what I do, unless it gets fixed and maintained, it will probably only get worse.

I need help. I've lived with this mouth for quite a while but I cannot bear to see it get worse. I'm afraid of what will happen if my gums recede even more. Would insurance cover grafts at that point? Probably. But for the sake of my teeth, I can't wait that long. My roots are exposed and that puts me at risk for losing my teeth. Yeah, it's no joke for me. My dentist even jokes saying that I should marry a rich dentist. I should have a frequent flyer card because I visit my dentist more than most. I need every single one of you to get the word out. I keep hoping that maybe someone with a lot of money will read this and be willing to help. I keep thinking a dentist in Richmond, Virginia will read this and say "Well I can donate a crown." I keep wishing a periodontist will say "I'll do a graft." I keep dreaming that a celebrity will say "Let me pay for your laminates."

I don't have a job and I'm trying to get one just like everyone else. My Mom can't afford all the dental work I need. I hate sounding like a sob story and I hate having to ask for help. I hate it even more because I know there are people out there who are worse off than me. But I figure that I have to take the chance, even if people think I'm not deserving. Honestly, I'm probably not deserving. I'm just another person in this world trying to do big things with barely anything and failing at it. One day though when I get back up on my feet, I promise I'll be an amazing person. And I promise that if I can help you in any way, I will. It's just taking me a while to become the person I know I can be.

Thank you for reading this. Thank you to all of my loyal followers, you know who you are. I'm thankful every day that I have a small audience who cares enough to read about my daily life.