On The Lupie Side Of The Street

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.