-There are many reasons that people get into fights. Some just like being right, others don’t want you to have the horrible disease, while others just think you’re crazy.
-Arguing for the sake of being right is just useless. It’s a waste of air and energy. I remember a person from my past that was like that. And I want to ask…did it make your life better to argue over stupid things and did it empower you to get into my business and argue. No one gets in my business anymore. I just do not let them.
-I know my parents didn’t want me to have this disease. And I understand why. Lupus is a horrible disease. It doesn’t have a cure and well, it’s difficult to manage.
-I forgive them… but…this is my fight. And please let me fight it….
-Seriously…I have to do a lot of this on my own. Not many people have the correct answers for me. And sadly well, I have to find my own.
-Yelling and screaming at me isn’t going to change my mind. I’m still going to seek out the truth. I’m not a child, I’m very much an adult. And I am tired of being told what it is and what it isn’t.
She had been sleeping all day and all night. She didn’t know what was wrong with her. All the doctors she visited didn’t have any answers for her. She was so upset with her reality…all the pain and fatigue. Was there no end?
Time seemed like an eternity… Each day went by so slow. She was too exhausted to do anything else but stare up at the ceiling, hoping for it all to end.
Chronic Fatigue…yes, that was where all her pain was coming from; but she was strong and she could do it. That’s what she always told herself. But there were times when she felt weak and couldn’t go on.
She didn’t have a lot of help at home. Her parents refused to believe she was sick and disowned her. She felt so alone and didn’t know how to move forward again. But she knew that eventually one day she was going to have to. She was brave and resilient…but she was scared.
“What if I’m wrong and I don’t have Lupus and I just have something autoimmune, not otherwise specified like my doctor told me?”
-I double-guess myself a lot because only inflammation showed up in my blood tests. It hurts me to be in this horrible place. My doctor is stumped and looks at me like a Cop does to a psychic when he has tried everything and has gotten no results.
-I’m really the only proof he has. My story leads him to the right path. I just tell him what I noticed about my body.
-In a way I’m helping him help me, because my intuition is so strong about this.
-I have an intuition that gets really strong about painful and personal situations. It’s always been this way. Somehow…I just knew.
-I guess I’ve always known I had Lupus. I relate completely to the symptoms. I have this disease but it doesn’t have me.
She soon finished her run and came across a church. The church was beautiful, made of lime stone, the walls painted white, with a bell tower on top of the monument. She then noticed a statue in the front of the yard.
She was drawn to the church and even more drawn to the statue. She decided to walk over to it. She looked up at the beautiful stone woman. It wasn’t naked. It had a gorgeous round face and grey eyes. It had flowing hair that went down to her feet.
It stood tall in robes that went down to the ground. It looked so calm and didn’t even seem scared of pain.
Nicole wasn’t like that…she had not found happiness due to Lupus. She was afraid her doctor was wrong… It really was true; every case of Lupus was so different. Sometimes she just didn’t know what was going on.
She gently pressed against the woman’s breasts and pushed. Why she was pushing against the statue, she did not know…but something inside urged her to do that.
Sometimes equations and tests didn’t matter. It was the intuition that led the way.
"Why have I lost so many friends?" ~ Some people just don't understand the nature of Lupus and how it can make someone very sick. Some people don't want that burden in their lives. They just can't deal with the disease. It's a cancer in their lives.
But does that mean that we are burdens and cancers of the soul? Are we the ones who ruin people's lives with our illness.
No we are not those kind of people. It's just how other people who don't have Lupus view us. They don't have it and don't understand. It takes a strong and compassionate person to be caring towards someone who carries a disease that they do not have.
I think we need more people like that in this world. Kindness is a blessing to those who need it in their lives.
So...I say...so what if those people left me... They are missing out on a beautiful and strong person who would have always had their back. Whenever a friend leaves, we find out who they really are.
In my case I found out that the lost friends were cowardly....
"What if he doesn't know what he's doing?" - Something I worry about. My rheumatologist just came out of medical school. He's very young. And I'm afraid that he doesn't understand Lupus. Hell, not many people do understand the disease. It's going to take a long time for him to finally know, and an even longer time for the world to finally get Lupus.
"Am I going to die?" - I think we all think this because we're scared. But I have mild Lupus and that is not supposed to kill me. But I think it's normal to think that... But at the same time I hate myself for thinking that way because there are people who are worse off than myself. I mean...how could I be so selfish?
Today I am just trying to look at the positives of Life. Life is hard with Lupus but I am trying to just see the positives instead of the negatives. Everyone looks at the negatives, it seems. Doesn’t one person want to see one ray of light.
“I am the better man…”
Life has taught me a lot of good stuff. More than anything it taught me to be careful. Every day could just be our last…
I never really thought about it that way…maybe I should try to enjoy life more?
“When I look to leave her…”
I want to leave all my negative thinking behind. I want to vent when I need to, but I don’t want to always be thinking negative. Isn’t it odd how positive I’ve become? Well…I used to be really negative…and now I’m really trying to be happy with my life.
“I always stagger back again.”
I don’t really want to leave anyone or anything behind in my life. Especially not God. I think God was what gave me hope throughout this whole ordeal. It’s hard to be positive without him. So I’m glad I have him.
“Once I built an ivory Tower.”
My joints are still a little swollen. That’s the one thing I hate about this disease. The swelling…it just makes movement so impossible.
“So I could worship from above.”
I am having an easier time breathing… But that’s because I am taking SAM-e. It’s a natural NSAID. It helps with my joints and my lungs. I like it a lot. I am getting out more and trying to exercise.
“When I climb down to be set free.”
I just want to be free of all this stuff. But I know that won’t happen. This is my cross to bear. It’s something I am going to have deal with the rest of my life, at least until there is a cure.
“She took me in again.”
Oh Lupus, why do you have to make hate the sun???? Seriously, it’s a beautiful day and I’m afraid of aggravating you. I don’t want to wake up tired…so please stop?
“There’s a big, a big hard sun, beating on people in a big hard world.”
When my time is up I know I’ll be going to a better place. A place with God by my side. I know that sounds weird to people who aren’t Christian but that’s just what I believe. I love God and I will always feel this way.
“When our lives are done…”
I don’t really think of lives as being *done* and whatnot. I think we all have a purpose here and that purpose is only know to the person themselves.
“Will we say we had our fun?”
Despite being sick a lot of the time…I did have my fun. I made fun in my own way. Last night, I drank four hard lemonades and got pretty stinking drunk, but I had fun. I would be doing that with my friends at college. I made my own party. A party of one, and I always had fun. Life doesn’t stop being fun once you get sick.
“Will we make a mark this time?”
I believe I have made my mark this time. I am helping people with Lupus, Fibro, PTSD, BPD, Bipolar, CFS and DID. For some reason, I just want to help. I guess it is because of my history, being labeled as Bipolar and such…then finding out I had all these monsters inside me. I want to help. I just…want…to help.
“Will we say we always tried?”
Yes. I have always tried. It’s one of my strong suits: trying. Yesterday I tried to climb a mountain. We didn’t end up climbing the mountain though. But still…I…tried…
And I know the hand of God is pushing me through all of this.
“Standing on the rooftops everybody scream your heart out…”
That’s me…just enjoying life. Not letting anyone take me away from my state of being.
“All the love I’ve met…” I had a lot of weird relationships when I found out I was sick. A lot of guys wanted sex from me, or wanted to marry me, only a few were *okay*.
Then I told myself that it wasn’t just love from a soul mate that makes you happy, it’s love from true friends as well.
A lot of people don’t know this, but you don’t need a soul mate to be eternally happy. Just love the life around you. Like me, I love everything.
“I have no regrets…”
Living life with no regrets is the way to be. That’s how I live my life. We really shouldn’t regret anything, because everything in our lives has made us a different person today.
For those of you who think I’m naïve, idealistic, etc. for saying this…bite me. I am who I am. I’m going to share what I believe has made me a better person.
“If it all ends now, I’m set.”
This may sound crazy, but I prepare for everyday to be my last. That’s why I just try to live life to the fullest, no matter how horrible the day was. You have to do that if you want to be free.
“Standing on the rooftops, wait until the bombs drop…”
Then of course there is drama that sneaks into my life from time to time. I used to get angry about it…and now I just say “bite me”. Seriously, that’s what I say. Because life is too short for all that BS.
“This is all we got now, scream until your heart stops…”
Yup I may be stuck at home due to a couple incurable conditions, but God gave me the gift of music and I’m going to use it to help others. And he made me smart so I’m going to be doing Criminal Justice as my major. I should have done that when I first got to college. I guess I just wasn’t thinking. All we have is our lives and our happiness. We just need to grab onto each day.
“Never gonna regret watching every sunset…”
No more regrets. I’m not gonna have any more regrets.
