On The Lupie Side Of The Street

I know I haven't posted on here for a LONG time but I have decided to move my blog over to Tumblr. It feels like a much easier, more streamlined blog than Blogger. I haven't figured out how to move all of my posts over yet, but if you want to read new posts, head on over to http://loverlylupieme.tumblr.com/

Thank you for being such faithful readers. I'm hoping with an easier blogging format, I'll find myself blogging more.

I don't like to talk about my family too much on here. I figure they have their owns lives and if they want the world to know about it, they can write their own blog. They deserve their privacy if that's what they want. But this is something I just can't hold in any longer and I've been holding it in for about two weeks now.

My favorite Uncle, my only Uncle actually, was diagnosed with lung cancer. The biopsy just confirmed it today but we still don't know the type or stage. He had been sick for about two months before this was discovered. You would think after the tests he had done, lung cancer would have been detected sooner? It wasn't though.

I know that what he is going to experience with cancer is going to be quite possibly one of the hardest battles of his life. Let me tell you, this man has battled so much already. He was in a horrific accident about 14 years ago and he broke his back which left him paralyzed from about the waist down. My Uncle was bound and determined to learn how to walk again even though doctors said he never would. He now walks with the assistance of some of the most awesome canes you will ever see. He still uses a wheelchair because walking is absolutely exhausting for him. But he walks which is what counts.

What I know from my personal experiences dealing with chronic illnesses, he is in for a long, hard road. It doesn't matter whether he chooses to go through with treatment or not, it will still be hard. He's a strong man and he doesn't like to accept help, we're alike in that way. We don't like hand outs, we don't like people having pity on us. Life is what it is and all we can do is live it, whether it is good, bad, or flat out ugly. My Uncle is a fighter though, he has fought to live through so much already. He can fight through this, I know this in my heart. He can do this. When you are sick and you have to look death in the face every single day, what keeps you going is your will to live. You have to want to live, my Uncle wants to live.

As most of y'all know, I'm a big fan of Life is good products. I can't afford their merchandise very often because a lot of it is too expensive for my budget. But I do have a few of their items which I absolutely love to pieces. My tattered brown cap with the pink heart has a deeper meaning to me than what the outside world sees. I have an awesome olive green cap that I wanted so bad and I never thought I could have it because it was too expensive. It ended up showing up as a fantastic Easter present from an amazing friend. It was perfect because I was sick on Easter Sunday so it was the pick me up I needed. For my Birthday I got a little silver cuff bracelet that says "Take your love everywhere you go." I wear that bracelet every single day. It's scuffed, scratched, worn, and loved dearly.

Regardless of what Life is good product I'm wearing, it's a little bit of a comfort for me. It's like the adult version of a security blanket that no one knows about but me. In my heart I knew that my Uncle needed something from Life is good. I knew that this could be the one thing that reminds him that he can go on. Even in the darkest of moments, he has something to live for. Before he started to get sick, he rode his tricked out motorcycle all the time. It was custom built for him, with extra wheels in the back for stability and all hand controls. He has been working on this motorcycle for the past few years and I think it was a dream come true for him to have it.

I remember one time back when I was really sick, he came over and he took me on a motorcycle ride. We rode all around and he would ask me if I wanted to ride some more. My answer? "Yes." I felt so free when I was on the motorcycle. The wind was blowing in my face, swirling all around me, and swooping all of my pain and fears away. I was free from sickness when I was on the back of that motorcycle. I will never in my life forget the way I felt and how wonderful it was.

I know that over the next few months he probably won't be riding his motorcycle as much. So I found the perfect Life is good t shirt for him to remind him of the good times. You can see the shirt here. When I saw it on the website I knew that this was the shirt, that he needed this shirt. I needed him to have this shirt. I wanted to get myself a matching one. But when I went to Jake & Friends and tried on a men's small, it swallowed me whole. I guess it worked out for the best, I didn't need a shirt and I couldn't afford two. I just wanted us to have short sleeve Lig shirts together, so we could be even more of a team. But it's OK because my Uncle needed this shirt, I'm glad the one I wanted for him was in stock. I am very thankful that I was able to stretch my budget enough to do this for him.

I hope his shirt gives him as much comfort as my bracelet or caps do. I hope it's his secret security blanket that carries him through the rough times. I hope when he wears it he remembers that I'm his cheerleader, I always have been and I always will be. I'm the funky, spunky, quirky, and weird niece who loves her even funkier, spunkier, quirkier, and weirder Uncle.

I hope it reminds him that one day he will be back on his motorcycle, flying down the road, and free to roam wherever his heart desires.

As most of you know, life has been rough. In between unresolved health problems, crazy insurance issues, and feeling so lost and hopeless, I've been a mess. But today I went to go see my two "nieces." Even if it was just for a few hours, I felt more centered and calmer than I've felt in the past few weeks.

I needed to see them today. I know that no matter what happens in my life, I know these two little girls will be there to greet me when I walk through their door. The baby, Jacqueline, she just wants to be held right now. She is so heavy in my arms, I have a hard time walking around while holding her, which seems to be her favorite. It hurts my arms, shoulders, lungs, and heart, I feel pain everywhere when I hold her. But when I hold Jacqueline, none of that matters because in that moment I know she needs me. She is such a trooper too, I've seen her fight and that sort of spirit is something that can never be extinguished.

My other niece, Caroline, she always is so excited to see me. She always wants to hug, sing the ABC's, climb all over me, and color. Caroline reminds me a lot about myself. She wants what she wants when she wants it. She has a mind of her own, very strong willed, even if it does get her in trouble. Caroline never gets tired of me, every time she sees me it's as if I'm a brand new toy. She knows my name, she says it like "Eh-kah" and it melts my heart every time. I see her growing up more and more each day. She is growing into her spirit and I love and accept every part of who she is. I always will.

I never thought I could love two children as much as I love Jacqueline and Caroline. But I do. I know I could never have children of my own but I'm OK with that. Because I have two lovely girls in my life who give me more love and more joy than I could ever dream of. Through all of these struggles I've been experiencing, Jacqueline and Caroline are a little thought in the back of my mind. Jacqueline had to be such a fighter in the beginning, she fought when she barely knew how to live in this world. How come I'm not fighting like that? Caroline is so strong, almost fierce, nothing knocks her down for very long. How come I'm not getting back up like she is?

I need to take a little lesson from my "nieces." I need to stay strong throughout all of this, living a life with chronic health problems is like being on a roller coaster all the time. I need to fight when I feel like I can barely survive in the world. When I fall down, I need to have a little cry, get back up, and keep on going.

Jacqueline and Caroline, I hope one day you can read this and know how much you have both changed my life.

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.

Every couple of years I like to get a new travel mug. My beloved old one with penguins in a snow scene that is printed on a metallic background is getting cracked and leaky. As much as I hate to see it go, I also dislike pouring hot tea on myself on accident. Luckily the great breaking of the travel mug coincided with a holiday that I know and love, Christmas. For the past few months, I've been lusting after a particular travel mug found at most Starbucks locations. Being in the land of the unemployed made the mug seem just out of reach for me. I felt like it wasn't meant to be for me but maybe for someone else?

In sub-Saharan Africa, 22 million people live with HIV. 22 million people, can you even begin to think about that number in your head? It's huge, it's mind boggling, but it isn't just a number. Each number stands for a person, a person with a heart who is holding onto their last bit of hope. They don't have the resources like we have to go to a hospital, to get medication, to stay alive for another day. I understand that our health care system is currently in shambles, but what the people in Africa are enduring is far worse.

I made the decision this evening that the travel mug that would make me the happiest would be the Product (RED) travel mug from Starbucks. I understand that only $1 US dollar goes towards fighting AIDS in Africa, but it is better than nothing. For 40 cents a day, two antiretroviral pills can be provided to a person living with HIV. In reality, my travel mug provided two and a half days worth of treatment for one person living with HIV. Two and a half days, big deal right? Well think about all of the other Product (RED) items that are being purchased around the world? Those dollars add up, they can provide a person with an extra day of a healthy life. Being chronically ill, I understand the importance of having one day when I feel completely healthy. I cannot imagine the pain and suffering a person endures while living with HIV, especially not in Africa.

My contribution may be small to this global effort, but I made a conscious effort. I decided that I could purchase any travel mug in a certain price range, but I chose to purchase this mug. I know my donation from my mug will not bring an immediate end to the AIDS crisis around the world. But I hope that with my tiny donation, it will help to keep one person alive for two and a half days. I hope that other people's purchases will help to keep that one person, but other people alive for many more days. Maybe, just maybe, one of those people will be able to come up with an idea, changing the rules of this cruel game, and maybe save the world from this global epidemic.

I may not be saving the world, but I could be saving the one person who could save the world.

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.

I am quite possibly one of the biggest Christmas fanatics you could ever meet. I'm the type who starts looking forward to Christmas in October. I'm one of those people who puts up the Christmas tree and decorations on Thanksgiving day. I love Christmas music and I listen to the local radio station that plays it constantly through Christmas day beginning on Thanksgiving. I enjoy Christmas crafts, like making my candy cane reindeer. I love to hand craft the Christmas presents for my friends and family. Christmas for me evokes so many wonderful feelings that fill me with joy.

For me though, Christmas isn't really about the anticipation, decorations, music, crafts, and presents. Christmas has such a deeper meaning to me, for me Christmas is about hope. Christmas gives me a sense of hope that I try to carry with me all year long. I hope for Christmas when I feel like I am trapped in my body of sickness. I hope for Christmas when I feel that nothing in my life is going right. I hope for Christmas when I need my heart to be filled with joy right at that exact moment. The thought of Christmas has carried me through many horrible times that I probably wouldn't have survived without my Christmas hope.

This year the only present I truly want is the gift of having enough hope to last me until next Christmas. I need hope to carry me through the rest of the winter when I tend to get my sickest. I need hope to carry me through the spring when I am looking for a sense of renewal in my life. I need hope in the summer to give me the energy to enjoy the extra time I get to spend with friends and family. I need hope in the autumn in order to truly appreciate the beautiful colors that the fall foliage brings. I especially need hope at Christmas, hope that the excitement for it will never fade year after year. Christmas is the one time of year where I truly get excited about life. I'm thrilled that it is finally my favorite time of year. I'm ecstatic that because of all the hope I am filled with I feel the amazing feeling of joy.

So instead of coming up with a Christmas list a mile long, try to think of the one thing that is going to carry you throughout the year. What is the one thing you absolutely cannot live without? I'm fairly certain it's not going to be a flat screen television, a Blu-Ray DVD player, or a video game console. I'm pretty sure that it is going to be something that is felt in your heart, that is unique to you, and you need it more than you think. Let that one thing carry you along through the year, comfort your soul in hard times, bring peace to your life always, and let it fill your heart with joy forever.

Happy Holidays to all of my blog readers!

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.

Dear Readers,
This is my 100th blog post. I can hardly believe that I have actually written 100 blogs. It seems like just yesterday I had this crazy notion to start this blog. It started out as a way for me to chronicle my life with lupus. Originally it was only supposed to be about lupus. But at a certain point I decided to do something that almost felt dangerous and forbidden. I opened up. This blog has been such a freeing, life changing experience for me. In the process of writing these little blogs, I've found pieces of myself that were lost over the years. This blog isn't about lupus, it's about me, all of me. Sometimes it's wonderfully inspirational and other times I break it down with the nitty gritty. That's life, it can't always be perfect and tough times make life worth living. Because eventually you overcome, you triumph, you win! Those rough patches show you who you really are, what you are made of, and that life is worth living.

Thank you for sticking with me throughout this journey. It helps me to know that people are out there reading this. I hope that some of my posts are helpful, that they impact you just as much as they impact me. I keep thinking that one of these days this blog will reach the right person at the right time and it will help them in ways I could never imagine. But for now I'll settle for the fact that this blog helps me along. I cannot express my thanks enough to each of you.

Here's a little entry that I hope is worthy enough for my 100th blog. Enjoy!

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Yesterday I went to a playground with a very close friend of mine and his precious daughter. The day was beautiful, the sun was shining, the air was warm, not in a stifling, but comforting. After feeling a bit under the weather for the past few days, stepping outside was a nice change of pace. It was lovely to breathe in the fresh air, to feel the gentle glow of the sun, to experience the slight breeze whispering over my skin. I feel it was just what the doctor ordered.

While I was at the playground, I did something I haven't done in ages, I decided to get on the swings. At first I thought "This is childish and stupid, why on earth would I get on the swings?" But then I thought to myself "Why the hell not?" So that's what I did, I got on the swing and I pumped my legs, just like I did when I was in elementary school. With each pump of my legs, I went higher and higher. The higher I went, the faster I went, and in that moment I remembered what it was like to be a kid again. Where nothing mattered except trying to go faster and higher than your friend who was next to you on the swings. When a skinned knee would only slow you down enough to put a band aid over it. Life was about little adventures that were imagined while reading books under the covers with a flashlight. It was simple, it was good, it was the way childhood should be.

I think sometimes we forget about the little kid inside of us. We automatically brush off our instinct to do something fun with the words "It's childish and stupid." Sometimes being childish and stupid is the best thing we can do for ourselves. It allows us to be free, our imaginations to soar, and in the end we find this inner peace that we once thought was lost. For me it's always the simple things that captivate me, that impact me the most. Those things help me to become a better Erika, constantly evolving but hardly ever taking the moment to realize why. I've realized sometimes you just have to let go, find that swing set, and fly. Soar through the air, feel the breeze in your hair, let your heart's worries fly away. Be a kid again, for just a moment let life be simple.

I don't typically talk politics, not on this blog and not in day to day conversation. It's something I don't like talking about, not that it doesn't interest me, but I don't like expressing my political opinion. But there is something I need to get out, it eats away at me every time I read the headlines. A government run health care system.

Yes, in theory, it sounds marvelous! Health care for everyone? Really? Oh it's just amazing! But seriously people, this can't work. First of all, it's not like this health care plan is going to kick in for a while, 2013 at the absolute earliest. Guess what though, we get to pay taxes on this future health care plan, possibly starting in 2010. So for three years we get to pay taxes on something that isn't actually helping us at the present time. In this grand recession where people are losing jobs left and right, when everyone seems to know someone who is unemployed, our taxes are going to be raised. Those of us who are fortunate enough to have health insurance will not only be paying for their current policy, but for an additional one through taxes. Here's another surprise, there is no guarantee a government run health care system will actually happen. It doesn't matter if you pay the taxes, there is still a chance it won't work out. All of that tax money will be gone, never to be seen again.

But let's believe for a moment that we willingly pay the taxes and the bill passes and takes effect. It doesn't matter if every person is taxed to the max, there simply isn't enough money for everyone to have health care. It's sad but it is also true. We are a nation who is debt because of frivolous spending and no one wants to take responsibility. How are we supposed to afford health care for all? It isn't possible so that is why there will be short cuts. You think it takes long enough now to see a specialist? Sometimes it takes up to six months to get in with a practice. Imagine how long it will take if the government runs our health care system? Furthermore, the government will decide if you even get to see a specialist.

Oh your heart is feeling a little off kilter? No you don't need a cardiologist and an EKG, you need your happy ER doctor to tell you that you just need to change your lifestyle. Never mind your heart is skipping beats, beating out of your chest, leaving you breathless, and causing you excruciating pain. You don't need to go to three cardiologists and have them all scratch their heads because they don't know what's wrong. You don't need an appointment with a cardiac electrophysiologist to figure out you have an extremely rare, dangerous in certain situations, and possibly fatal heart condition. You don't need any of that, what you need is to change your life style. That's exactly what is going to happen with government run health care. You won't get to see a specialist when you need to, you won't get the proper tests run, you're only going to get a half way excuse about why you feel the way you do.

Now this goes out especially to all of my chronically ill readers. Have you ever heard of end of life counseling? In this health care bill, it primarily applies to senior citizens whose health is declining. Every five years you will be counseled on how to live, or not live, the remaining time of your life. The focus isn't on getting you better, making you healthier so you can have a few more good years. It's about pain management and possibly teaching you the options on how to end your life sooner.

Cruel isn't it? But everyone wants free health care, right? That is part of how this program works, you get free health care while you are healthy. You're allowed the occasional case of the sniffles, a flu every now and again. God forbid you are diagnosed with a debilitating chronic illness, or an illness that is potentially deadly without proper treatment. I feel the end of life counseling will also extend to the chronically ill. The government is essentially saying "You're not as healthy as the rest of the general population, therefore you are disposable, good bye." That is how they will save money so they can attempt to provide some sort of health care to everyone else. The weak die off and the strong survive.

I admit, I voted for President Obama. I wasn't one of the "Yes, we can!" people. I was on the fence about who to vote for until I went to the polls. And now every single day I regret ever voting for him. It's because my life hangs on by a thread if this health care bill he proposed passes. I understand that lots of people don't have insurance, I might end up being one of them. But this government run health care system is not the way to go. Heck, let the people who have insurance keep their insurance. Let the government give out vouchers, create a tiered insurance policy that anyone can purchase. But don't fall for this health care plan that the government is proposing. It seems fine and dandy to those who are healthy. For someone like me though, I might as well dig my grave and hop in because I will not survive under this new plan.

I urge you to write to your representative, tell them that you are a voter, and explain your concerns. If change is what our nation needs, let it be the right type. Let it be the type that won't leave people like me out in the cold. Let it be the type that won't encourage your grandparents to give up their life. Let the change be something that allows us to live and say that we are not disposable, we are individuals, and we deserve more than this!

Here you can look up your representative using your state and zip code.

This morning I was in the shower and I was shampooing my hair for the second time, yes, I always wash my hair twice. I realized in that moment how much I love the way my hair feels during that second shampoo. How the tendrils of my hair intertwine with the sudsy white mass that covers my scalp. In that moment, everything feels so smooth, clean, and simply perfect. It got me thinking that I should make a list of my favorite things. In a way, it's a giant reminder of what I should be thankful for but I'm not always. Because in reality, not everyone has these favorite things, not everyone is given the opportunity to experience each one. So here it is, a blog entry having nothing to do with my life with lupus. Instead, a blog entry that has everything to do with my life and what makes me happy.

1. Shampooing my hair for the second time.
2. Remembering the taste of ginger ale on my tongue, how the bubbles tickled my mouth.
3. Perfumes with strong orange notes.
4. Freshly chopped cilantro, the aroma is intoxicating to me.
5. Water, I love the way water tastes, always pure and refreshing.
6. The texture of cold press watercolor paper.
7. Carr's Table Water crackers.
8. The giddy feelings I get when I receive a happy email, phone call, or text message from close friends.
9. Scrapbooks, scrapbooks make me very, very happy.
10. Scarves and fedoras, something about it seems classic to me. I could be terribly wrong? But who cares!
11. Green tea first thing in the morning.
12. Taking photographs of anything, it makes whatever the subject is significant in my eyes.
    
13. Music, anything goes. I love it when a song floats through the air, enters my heart, and sings to my soul.
14. Goofy dancing in the car, not while driving of course! Passenger dancing only!
15. Dreaming up recipes and seeing the finished product in my head.
16. Making cards and giving them to my friends.
17. Origami.
18. Reading a good book while listening to music.
19. Being in the kitchen, alone, and cooking whatever my heart desires.
20. Having Amy Winehouse stream into my ears via my iPod while shopping at Ukrops.
21. My t-shirt quilt.
22. Mondays.
23. Shredded wheat with unsweetened soy milk.
24. Anything having to do with Christmas. Crafts, carols, cookies.
25. The fingering that Regina Spektor does on the piano.
26. Lotion, I have incredibly dry skin.
27. Febreze and Lysol, if only the two could be combined?
28. Glitter pens, go ahead and call me a 13 year old girl.
29. Pandora Radio.
30. Thinking of Panama and everything I accomplished there. FYI: Used to be a missionary.
31. Penguins.
32. My closest friends who are always so dear to my heart. Ariel, Ashley, Michelle, Michele, and Jake.
33. When my Mom and I go shopping together.
34. The rare moment when my sister, Lindsay, and I don't fight.
35. Netflix.
36. Remembering the sweet, chocolate smoothness of a Galaxy chocolate bar melting in my mouth. Each taste captivating my senses.
37. My birthday.
38. Flowers, especially orange ones.
39. Fuzzy socks.
40. Crossword puzzles, especially when done with an amazing friend.
41. A violin and piano duet.
42. Snow, even flurries get me excited!
43. Being an industrious mouse.
44. The comfort of my own bed, it's fantastic. The right balance of softness and firmness, cushioning my body, cradling my aching muscles and bones.
45. Singing when I'm all alone.
46. Knowing that someone, somewhere, might be thinking of me, might be loving me, at the exact moment when I need it the most.

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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