The following Sunday
                  By the time Sunday had arrived I was feeling much better. There was never a day that I had gone without pain, but there were days where the pain was at a minimum and today was one of them. I was excited about attending church today because I was more comfortable and it felt good to not sit at home and be depressed. The plan was to soak as much information in as possible in order for me to be closer to God. I felt as if I’d be a much happier person had I been more connected to God. Maybe he’d reward me for being a good servant and heal me from this illness. While in youth ministry, I sat and thought about the times before I was diagnosed with MCTD. It was just 4 years ago that I was able to wash my hair, put on socks, get out of bed, brush my teeth, move around the house and make my own breakfast, all without complications. Now I felt like a robot. I felt as though I was playing tug-a-war with my own body. My brain would say, “Get up Lani and get dressed.” But my body would say, “No you’re too weak, stay in bed all day.” It was a battle in which I wasn’t prepared to fight at such a young age. But it was also a battle that I had no choice but to fight if I wanted to stay alive.
            My thoughts were interrupted by the youth pastor Samar. He asked if I were okay because apparently...

Hello beautiful people. Here is another poem preview. I have plenty of them. This particular one will be included in a future novel but in the meantime you can discover many others in my current poetry book called, "A Piece of Me" My current poetry book is available on Amazon, Kindle and through this website. Please check it out, you won't be disappointed. Enjoy!

LISTEN TO ME
I’ve been trying to tell you what’s it’s like to be me;
But I’m having trouble getting you to listen to me.
It’s really important that the world knows;
The things that this illness never shows.
A wolf attacks n the form of a disease;
This is why you should listen to me.
I didn’t ask for this life or this illness
But you should understand its prevalent realness
It could attack you just like it did me
You need to understand my harsh reality.
Different things in life will make you feel blue;
But this thing I go through could happen to you.
Why can’t you understand, why can’t you see?
Why won’t you take the time to listen to me?
You don’t have lupus so you may not care;
But the commonality of this illness isn’t rare!
I need you to understand this isn’t a good thing.
Not a life you want or a hardship you need.
Check early for symptoms that may show;
And show support so that the world can know.
Don’t feel sorry for me because this may one day be you;
Just know what I say is so very true.
This monster inside is not something you can see;
So when I talk about lupus, please listen to me.

Grandma Rose  
 Tears immediately rolled down my eyes as I marched right back upstairs. My feelings were hurt. My grandmother never showed sympathy towards me when it came to Carmelo. It really made me sad the more I thought about it. I never understood why she showed favoritism. I went into my room, laid on my bed and cried a silent cry. Life was difficult for me. I remember when my mother was alive she’d always allow me to lay on her lap while she rubbed my forehead whenever things got tough. I was still trying to understand these different mood swings that I would experience on a daily basis. I always felt like the outsider, the different one of the bunch, the girl who didn’t matter, the drama queen and the person I needed most wasn’t there. Grandma Rose was a sweetheart but she treated me like a baby. I was grateful for her but I couldn’t understand her lack of sympathy. She was such a strong willed woman but slightly aggressive.
                   She was a beautiful older aged woman and was very independent. Although she was retired, she was in good shape and kept herself up. She hardly ever bit her tongue and was quite outspoken. It threw people off sometimes because they viewed her as their elder but I was used to her being that way. She told us many stories about her childhood. She always reminded us that when life got hard she dealt with it instead of complaining. There was a mysterious side to her. She was open about many things but I knew there was something that she kept inside that not too many people knew about. She’d often daydream or would have distant stares. And sometimes she’d go in her room and wouldn’t want us to bother her and I’d hear her weeping late at night. While living with her I was forced to be tough even at times when I wanted to give up. It hurt. It was hard living in a world where no one understood. No one felt what I felt and no one tried to understand.
Lupus was hard. It was evil and destroying my inner being. I had to put a stop to it someway, somehow. I just didn’t know how. But I knew if I didn’t do something soon, that it’d destroy every piece of me. Soon as my tears started to dry up, Carmelo stuck his head in the doorway and said, “I’m finished crybaby” He had a mischievous smirk on his face. I knew my brother loved me, but he also loved to pick on me and make me miserable. It was hard to deal with. I felt like I needed support from him and my grandmother but I just didn’t know how to ask. I stood up silently and walked back to the restroom to finish my shower. Afterwards I went downstairs silently, ate my breakfast silently, and took my medicine silently. The entire time during breakfast, Carmelo spoke his usual. He bragged about his athletic abilities while Grandma Rose entertained the conversation with her attention. It made me jealous sometimes and I knew my grandmother could tell that something bothered me but she never gave my feelings too much attention. Carmelo was so mean to me sometimes but I knew he cared. He looked over at me with guilt in his eyes. “Cheer up buttercup, you know the plumbing in my restroom is under construction and I didn’t take that long using yours. Here you go, have the last cinnamon roll and give us a morning smile.” He said gracefully. Sometimes I thought my brother was bi-polar because he would always show me two different sides of himself. I saw his mean side and his sweet side. It was always a mixture of both, never one over the other. I gave him half of a smirk and a frown at the same time. “I’ll even wash the dishes, so you won’t have to.” He said suspiciously. I knew he only did this to stay on Grandma Rose’s good side but at this point it didn’t bother me because I really didn’t want to wash dishes.
“Alright you two, let’s get out of here. You both know I don’t like to be late. Carmelo those dishes can wait until after church.” said Grandma Rose. We all grabbed our jackets and headed out the door.

The following poem is called, "MY BATTLE WITH LIFE” It comes from my current available poetry book.

MY BATTLE WITH LIFE

I’m always in a constant fight
Day in, day out I battle with life.
I feel like I’m battling with no shield
Confused about an illness and learning to deal.
How do you win a battle against yourself?
I’ll choose another hardship; this one belongs on the shelf.
I never really win, it’s like I constantly lose.
It’s hard when there aren’t any available options to choose.
Sometimes I think maybe it’s all just a dream
Or a curse that’s temporarily consuming me.
How do I fight a battle in which I have no control?
A battle against myself with no restrictions or goals.
My main focus staying alive;
And a permanent strategy on how to survive.
This illness has no sympathy, no sorrow no remorse.
No lessons on how to win, no classes no course.
As my days go on I constantly learn
To be patient for good days until it’s my turn.
I wonder if lupus attacks out of spite.
Just to prevent me from winning this fight.
Whatever it is it doesn’t seem right
To be involved in a constant battle with my life.

I GUARANTEE
I guarantee you’re not as strong as me.
 
You live your life as simple as can be.
 
People judge me every day and constantly stare.
 
They don’t know half of the burden that I bare.
 
I guarantee you couldn’t walk a day in my shoes;
 
Receiving funny looks and comments that are rude.
 
I guarantee you couldn’t live a day like this                                                       
 
Medications, aches and scares are absolutely no bliss.
 
I guarantee you can’t handle the ignorant comments I endure;
 
Relationships that are challenged and ones that are pure.
 
I guarantee you wouldn’t enjoy this body of mine;
 
Your skin is beautiful, mine doesn’t even shine.
 
Constant doctor’s appointments, diagnosis’s’, other issues too;
 
I’d appreciate your life much better than you do.
 
I guarantee you couldn’t handle a life you don’t like,
 
And I’m just being honest, not speaking out of spite.
 
Make up doesn’t fix my problems and neither does a fancy dress
 
I wake up to no escape and prepare for my next stress.
 
You party, work, go to school and live life so free.
 
I guarantee you wouldn’t last a day being me.
 
If you think I’m wrong then prove it so the world can see.
 
My life is complicated, not as simple as you think.
 
Appreciate what you have is what I’ve been taught.
 
But how should I feel when I lose my hair by default?
 
I’ve accepted the consequences of this disease
 
I guarantee you wouldn’t be able to challenge me.
 
Wake up in the morning and don’t comb your hair
 
Make your face look disfigured so people can stare
 
Pick up your piles of stress and place them on a table
 
Limit your actions as if you’re disabled.
 
Go to the doctor’s every other day
 
I guarantee there is no way you can live this way.
 
Please hear me out when I tell you it’s true.
 
I hope something like this may never affect you.
 
I haven’t lost my hope or strength, but I have accepted my reality.
 
Once you understand this, you’ll appreciate much more and this I guarantee.
 

Greetings everyone! Today hasn't been such a bad day besides the consistent pain, I've endured from these damn skin ulcers. The sad apart about it is that I have no idea where they come from and neither does my doctors. They presume it's lupus related.

Isn't it sad when you seek help but don't obtain the answer that you are looking for? This is the story of my life. I'm sure my fellow lupies could relate. You go to the doctors and sometimes they act jus as confused as you.

Now because of this recent inconvenience I am no longer allowed to do any activity involving my legs. This includes running, climbing, swimming, jumping, fast walking, etc. Now I have to go talk to my fitness instructor and explain to him my situation.

This kind of frustrates me because everyone always thinks I'm making excuses. Sometimes I find myself overcompensating just to prove to people that I'm not lazy and I do want to be average but I'm not. The bottom line is that I HAVE LUPUS, and there's not a damn thing that I can do about it.

So when I show up to class today and I have to sit on the sidelines due to health conditions, I know people will look at me and view it as unfair that they have to run for 15 minutes and I don't.

But honestly, I look at people and view my life as being unfair because I have to suffer with lupus and  they don't.

Aside of my crazy lupus life, I have so much planned ahead. I have a full head of individuals to braid on Friday, and then I will be flying out to San Francisco to celebrate my sister's birthday. I also have a 15 page leadership analysis paper due Sunday. Now only if lupus will allow these activities to occur!

Please pray for me and enjoy your day!

Today is NOT good! I'm so emotional right now, I could scream! I haven't been able to really function at work and I'm just wishing that I could get up and run away to an island with no one around. My body is experiencing so many difficult changes and not necessarily good ones. I'm at my maximum weight because of these freaking steroids and I feel like my doctors just keeps increasing my meds.

What the fuck? Why can't it just be right for one whole damn week? I heard someone complaining about not being able to find an outfit for their birthday, I wanted to say shut the hell up! There's worse problems out there!

I took my car to get a freaking smog and they charged me $250, damn, I feel like my pockets are being raped. Then he tells me I need a damn valve body transmission. Hell I might as well replace the damn car. Do you have any idea how much they'll charge me for a 525i series BMW? Then they increased my daycare fees. Like damn can I catch a break?

I already have to deal with this fucking dumb ass lupus and now this shit! I'm so overwhelmed, frustrated, exhausted, fed up, hopeless. Why can't I catch a break? Why can't I just be stress free?

My body is swollen, hands, feet, legs, and ankles. I'm tired as hell. School puts a lot of pressure of me, work puts pressure on me, motherhood puts pressure on me. Damn, where's my happy ending?

I know people are going through worse situations but I need a break. Just one day free of no worries, no drama, no stress, no confusion.

I'm at a lost for words and my brain is running 100 miles per minute! I couldn't even vent enough to write a poem!

I just feel like life isn't fair. Bad things still happen to good people and I know that I'm a good person! I hope my day tomorrow is much better!

MAY THE LORD BE WITH ME!

The following poem is called, "A Piece of Me." It comes from my current available poetry book.

A PIECE OF ME
 
I’m presenting you with a piece of me
 
I’ll always remain strong and never weak
 
Sometimes lupus gets the best of me
 
But I’m standing here strong and free
 
Life presents hardships that you are faced to see
 
But I won’t give up as long as I can breathe
 
I want to share with you my joy and some of my strife,
 
So you can understand a big piece of my life
 
I’m blessed to have conquered so much pain and sorrow
 
A piece of me I’ll give for you to borrow
 
I possess strength, faith, love and hope
 
Through all my downfalls I’ve managed to cope.
 
Not too many could do what I do
 
I’ve been through so much; no offense to you.
 
I’ve remained humble, kind and true.
 
Most can’t handle what I’ve been through.
 
Here’s a piece of me for all that it’s worth
 
Walk a day in my shoes to understand my hurt
 
There’s a crazy illness that has entrapped my life
 
You may not understand now, but at the end you just might
 
When you finally understand, don’t feel sorry for me
 
I’m doing this for you because I want you to see
 
That life is a challenge even when it feels like a breeze
 
Appreciate the good things and any lack of need.
 
 Prepare yourself, open your heart and mind for this read.
 
Ride along on my journey and accept a piece of me.

I just love motivational messages or quotes. They really help keep me going. Every blog that I write, I plan to incorporate some type of quote to start off with. Today was just another day for me. No serious pain besides from this morning. Getting out of bed is always tough for me. My joints are usually stiff and my body doesn't create strength until about an hour afterwards. I woke up with my usual routine except today I had to go visit my Rheumatologists. During my visit he reported good news in regards to my kidneys and my test results. Although I was happy to hear the news, I'd prefer to hear the news about a cure. From the doctor's I went to work. I get distracted often at work because I'm always so tired. Daily I fight to stay awake. This is my biggest struggle with lupus. Today we had our annual employee luncheon at Darby's. It was a nice outing away from work and in a different scenery. I enjoyed myself with no real or major issues. Lupus is never my cup of tea but today it wasn't too bad besides me freezing like crazy at the office. A little Fun!
Three names I go by
1. Toya
2. DeAnn
3. Mama Toy/Grandma Toy

Three places I lived
1. Santa Barbara
2. Colton
3. Cincinnati
Three places I have worked
1. Charlotte Russe
2. Eisenhower High School
3. County of San Bernardino
Three things I love to watch
1. My son play sports
2. Netflix
3. Being Mary Jane
Three places I have been
1. New Mexico
2. Chicago
3. San Diego
Three things I love to eat
1. Chocolate
2. Mexican Food
3. Banana Pudding
Three people I think will respond
1. Arrowya
2. Quina
3. Meosha
Three things I am looking forward to
1. Sharing my surprise
2. Graduating
3. Getting Married