~A Piece of Me: Volume II by ToyDeann~
"I want you to do something for me. Do it right after you read this. Close your eyes. Think of yourself. Think of your best qualities. Think of what you love most about yourself. Think of what you dislike but also how you are able to change it. Now imagine losing all of your hair. Imagine your scalp bleeding from scabs and scars. Imagine waking up with your body covered in rashes. Imagine having deep cut, painful wounds on your legs, arms, and hands. Imagine your face swollen, eyes narrow and vision going in and out. Imagine your weight getting out of control and your body deforming. Imagine looking in the mirror and the person that you once stared at was no longer the same, How would you deal? I battle with this daily."
~A Piece of Me: Volume II by ToyDeann~
You and I have differences, indeed it's true.
I have lupus, what about you?
Your skin may be light, and mine's dark.
So many differences where do I start?
I've humbled myself because of this illness.
So much in life has bothered my spirits.
Daily I suffer, and I know others suffer too!
So what is the big difference between me and you?
I care about the sick and even the poor,
but your careless thoughts bother me much more!
I'd give my last if I had it, to you and a friend,
but some people wouldn't give if the world was to end.
Hurricanes, earthquakes and tornados bother me,
It bothers me more than most and sometimes deeply.
Anytime there's a tragedy, it affects someone.
For me the incidents linger, for you, life goes on.
So many situations have me scared and shook.
Why did we lose those babies at Sandy Hook?
My heart is hurt, sad, and neglected,
and your biggest concern is the President that we elected.
There is so much going on that most of you know nothing about,
do you even care about the sick ones, the famine and the droughts?
You have great things that are pleasurable and new,
but what about the people are less fortunate than you?
You say it's their fault, because they were given opportunities too,
but you know nothing about their life and what they've been through.
I can't stand when people lie, steal, and are greedy and fake.
I'm the type of person who'd rather give than take.
Most people in life forget where they come from,
I'm glad I'm different from most, I'm only like some.
As easy as you got it, as quick as it can go
So don’t be so quick to judge the people you don’t know.
Try to have some compassion and some kindness in your heart.
For those who have given up on life, teach them a new start.
Your blessings may be beginnings, while misfortunes may cause end.
We need to end violence and stop allowing suicide to win.
This world is a bigger mess than what we started with,
I wake up every day in shock because I live in this.
Lupus always has me so deep in thought,
but I am grateful for all that it has taught.
Let's stop being hateful, and selfish and bland,
if someone is struggling, then lend them a hand.
It's not hard to be kind, or considerate, you see.
I've embraced life values and know what hard times do to me
I’d rather have friends than waste time on enemies.
If you have hate towards me than I’ll let you be.
See, our thoughts and our actions reflect our true being,
Sometimes I don't understand the hatred I continue seeing.
How did we get this way? It wasn't God's plan for us.
What happened to the real value of "In GOD we trust?"
We hurt, rob and kill our own neighbors and brothers,
When we really have no rights to harm one another.
Why can't we wake up and just see the truth?
There's no life without me, but also none without you.
So the real difference you see lies within our hearts.
It’s time to make this world better for all, so where should we start?
Poem that I knocked out in about 5 minutes! This happens when I write with my emotions...
I Stand Alone
Alone is where I’m standing.
Alone is where I’ll be.
Alone is a confinement in a place that I can’t see.
I don’t want to be alone but that’s where I’ll be.
Because I live in a world amongst most who will don’t understand me.
Alone is where I’m standing.
Alone is where I’ll be,
On one’s own is my present.
Alone in thoughts is what I see.
I stand alone but I don’t want to be.
These thoughts in my head are confusing me.
Alone is where I’m standing.
Alone is where I’ll be.
Living in my own mind and thoughts come naturally.
A place of depression that I can’t surely see,
But not a place of favor or where I want to be.
It’s overwhelming and has shackles upon me.
Alone is where I’m standing.
Alone is where I’ll be.
I need to release from this mindset and escape a piece of me.
Hurt and pain is powering but it’s not all that I see.
Being alone will causes those things and I just let it be.
Alone is where I was standing.
Alone is how I used to be.
I finally found a breakthrough and now I’m feeling free.
I’ve taken control of emotions because it’s not who I want to be.
Everyday I’m positive and alone is far from me.
I used to stand alone.
But now I stand free.
I’m glad those words, no longer pertain to me.
I finally found relief and also found strength.
I’m now grateful for a new reality.
(Please see previous July 2018 blog posts to discover how I got to this point)
Fast forward about 7 months later and now we're here. On May 31, 2018 I went to see my family Physician because some weird things were happening to my body that had never occurred before. I took a nap because I was experiencing a really bad headache. It wasn't normal and it hurt so bad I couldn't focus. I was also having vision issues and sensitivity to the light. I felt like maybe if I sleep and wake up, then it would all disappear. The nap lasted about 5 minutes and then I woke up to a weird numbing and tingling feeling on the left side of my body. It lasted about 5 minutes. I immediately scheduled an appointment and was fortunately able to go see my doctor the same day. He did a typical Neurological exam on me because I expressed that I thought I was experiencing something called a Paraplegic Migraine. He stated that everything came back negative and that he thought it was just a Migraine with Aura. He sent me home on prescribed medication called SUMAtriptan (IMITREX) and told me to take only as needed. I knew this wasn't just a headache so I didn't get the prescription filled. I just purchased the magnesium oxide and Vitamin B-2 as instructed. He told me if it happened again to go to the Emergency Room.
The weekend passes. I'm still feeling awkward but I just decide to continue my daily routine. Monday, June 4th approaches and I go to work. Everything is as normal as can be. After work, I pick up my son as I usually do and go home. At this time my boyfriend is asleep and sometimes he can sleep pretty hard so when I got home I didn't wake him. I got sit on the couch and then I end up on a phone call with my mom while my son is in his room. Within 15 minutes I start feeling another headache so I tell my mom about it. Then I start to feel the same tingling and numbing that I had felt on memorial day feeling on the right side of my body. My face starts feeling droopy as I'm talking to my mom. She tells me to go to the hospital. After I hang up with her I realize I really have to use the restroom and I have no balance. I feel light headed and my vision starts messing with me. I felt like my eye was twitching and I was walking a mile to the next room which wasn't too far away. The entire time I'm calling out for my boyfriend to help as I try to make it to the restroom. My coordination was way off and my sensation of touch felt like needles. It was so awkward. Finally he woke up and was able to help me, which was good because there was no way that I was able to use it without him. As I told him that we needed to get to the ER ASAP my speech began to slur. I couldn't feel the entire right side of my leg and right arm and he had to physically lift me to get me to the front door. As I waited as he pulled the car up I couldn't say one thing correctly. My son kept asking me what was wrong with my face and I felt like I was talking with my tongue and if I had just gotten back from the Dentist and my entire mouth was numb. I started seeing double and the entire time I had a headache. We were all freaking out but we finally made it. The funny thing is that by the time we made it there all of the symptoms were gone. Even the slurred speech. I'm sure the nurses probably thought I was insane but they still took me in the back immediately. I had multiple tests done from MRI's to CT scans and EKG's and no stroke was revealed but all of the symptoms were there. Of course having this complex medical history they decided to admit me and monitor for observance. During that stay there were no more episodes nor symptoms so I was discharged Wednesday, June 6, 2018 and told to take it easy. Everyone was still concerned about what was causing these issues and trying to figure out why, when or if it would happen again. My entire concern was why now? What was I doing wrong? I had started changing my diet in January but that should be a great thing right?
So the day that my life really changed finally approaches. Friday, June 8, 2018. My brother's 30th birthday. What a coincidence right? Since the age of 9, I knew I had lupus. But knowing I had lupus never meant I was incapable, never meant I needed assistance, never meant I couldn't do it. I've never said that I had a disability. I've never accepted that term in my life before because I knew that lupus would never defeat me.
A disability was an impairment. I wasn't impaired. I mean I had random flare ups that caused destruction to my body from time to time but who was that supposed to stop? Not me? Not Toya? Remember I didn't need any help. I was cocky. I've been doing this. I can continue doing this. I didn't need anybody. I didn't dig deep though on the term. The meaning of this impairment. It involved developmental, intellectual, mental physical, sensory, cognitive, etc and it could affect a person's life activities for a lifetime.
I had been experiencing so many limitations and restrictions in life and really didn't pay much attention because I felt as though I could fix it. There was always difficulty but also a solution. My illness had been complex all of my life and it's always affected how I lived but I just never really took it as serious as I should have because I knew it could be fixed with a pill, a test, surgery, technology, etc. I was putting a bandage on my pain, my suffering, my hardships, my torture, my exhaustion, my weakness and that was how I was able to stay so strong. I wasn't acknowledging my true struggle. And now I'm worn out.
I'm going to tell you the story to the best of recollection because most of this experience I had been unconscious. The night prior I had a horrible sleep and I had experienced the tingling and numbing sensation again but this time on the right side of my body. I decided to stay home this time because I just knew if I went to the ER, they would send me home once again not knowing what was wrong with me. I was going to tough it out this time. Crazy thing is that it lasted all day and night. I couldn't move my right side. I felt paralyzed. But I knew that I'd be fine by morning. Wrong. I was worse. My boyfriend called the ambulance immediately when he found me on the restroom floor making noises as if I was in pain and not responsive. I remember a female paramedic, and about 4 male paramedics surrounding me, in my room, asking me what felt like about 100 questions. I was lifted into my bed and surrounded. I was confused, not really conscious, frustrated, and worse of all speechless. I was incapable of answering one question. I knew the answers, well some of them but I couldn't speak them. I tried. Nothing came out.
Next thing I know, I'm being carried down the stairs and into an ambulance. The entire journey being asked questions. I'm pissed because I want these trained professionals to know they're upsetting me. Stop asking me questions. I can't talk. Just stop it. I'm confused. You aren't helping me. Let me process what the hell is going on. I don't even know why you're here. It's too much pressure. This is my entire thought process. Then I end up in a room with more chaos. More questions. All I could think of is I had to use the restroom but they wouldn't allow me to get out of the bed. I understood why. But if you planned to not hook me up to a catheter why wouldn't you NOT expect me have to go to the restroom. I hated that ER nurse. I knew she probably had good intentions but they definitely need better training for patients that were in my condition because she did not help the situation. She kept saying, we need you to tell us what's wrong. You have to tell us so we can help you. Please tell us what you need. We don't know what to do or how to take care of you if you if you don't tell us. It was so much pressure. Excuse my language but I wanted to say "BITCH, I can't talk, get the hell out of my face."
She was a trained professional and did nothing but upset me. I didn't know what I was experiencing. I didn't know why I couldn't feel or move the entire right side of my body, I didn't know why I was unconscious, I didn't know why I kept getting migraines, I didn't know why I couldn't talk. I was nonverbal out of know where and I couldn't tell you why. How could she not know that I had absolutely no control of these symptoms. I had no idea what this was or why it was happening. I had so much that I wanted to say, but couldn't say it. Was I brain damaged? This was the end, I just knew it. I'd never speak again. I'd never walk again. I'd never be Toya again. This was my disability. The one thing in my life I could not control. I could not fix. An impairment. The day my life changed forever.
I spent June 8-June 23 2018 in the hospital struggling and fighting the most difficult fight I've ever had to fight. There's so much that I went through on this most recent journey of mine. I'm so grateful to be alive and recovering. This experience has humbled me, changed me, and woke me up. If I seem different. I am. Mentally I'm trying to process who I've become based on what I've experienced and it hasn't been easy. I've lost motivation to my biggest passion within 2 years. That loss is no longer there. I am back
I spent the first week in ICU. I was barely surviving. I was much too weak to fight. I remember just laying in that hospital bed so angry because I couldn’t speak. Looking at familiar faces that I couldn’t talk to. Being asked questions that I couldn’t answer. I was losing myself all at once and I was going to allow it to happen, because I was tired and worn out. I feel like I’ve been suffering for a lifetime and at this point I needed a break. I wasn’t myself though. I wasn’t thinking. A break was going to ruin me because that strength was necessary in order for me to survive. I didn’t eat for 4 days and vomiting became a habit. Finally I was put on a clear liquid diet. This wasn’t going to help me. You think ice and jello would repair this hungry. For the first time I was seriously suffering and allowing myself to. I wanted to give up so bad. One night my boyfriend brought my son to visit me. At the time I didn’t know he was my son. He was just a familiar face. But I remember him saying, “Mom are you okay? I miss you mom. It’s me Ja’len.” I was nonverbal so I didn’t respond but I also didn’t know who he was. He was just a kid to me. A kid calling me mom. That moment still hurts my heart til this day.
I can only imagine how it made him feel. A couple of days later I remember staring up at my father one day as he held my hand. By this time I was able to speak a few words but my sentences weren’t flowing yet. but I had more of a memory recollection. It was progress but it was very slow. For some reason I was still very weak. At that moment I was at my weakest and I was so afraid. It was an awkward feeling. I just knew I wouldn’t make it another 24 hours. I was counting my last breath and I was extremely angry and frustrated. It wasn’t fair. I want to say goodbye. Please God let me say goodbye. Let me hug my son and tell him I love him. Let me make sure he’s good first. Let me patch up ill relationships. Let me tell my family and friends that I love them. Let me finish accomplishing my goals. I have so much more to do, so much more to live for. These were my thoughts before I allowed the tears to run down my face. I cried and I said, “Am I going to…” He instantly stopped me. And said NO. Don’t say it. You’ll be fine. You’re going to get out of here. We’re going to be fine. I’ve been through a lot of turmoil, pain, struggle, suffering, tears, and weakness, but the feeling of death. That was new for me. I had never felt death before.
We prayed and God got me through that day. The next day it was time to fight. So I did. I fought through the blood transfusions, medications, vomiting, physical therapy, lumbar puncture, stomach pains, migraines, diaper wearing, hunger pains, sleepless nights, painful blood draws, platelet transfusion, lab work, steroids, antibiotics, picline failure and the list goes on. Finally after regaining the feeling in my right side, eating solid foods, being able to walk, talk and remember things, with good test results, I was able to go home. I survived. I’m happy and relieved.
Things have changed though. I’m not the same person. If I seem to be different. I am. I’m still recovering. Since this experience I’ve cared less about what people think and more about my feelings. I haven’t really had much of a filter and I’m okay with allowing the full me to take over.
All of my life I’ve cared what people thought of me. I’ve became a people pleaser. Always letting what the next person had to say affect me. I’ve had family members including my siblings say cruel things to me, even when I’ve been there for them or had their back when they were in need. I’ve come to the point and realization that you can’t trust any one and you just have to live your own life. People will say I’m proud of you when you’re doing well but are no where to be found when you’re struggling. If you’re not around while the ship is sinking don’t come around once the life jacket saves me. People will talk about you when you’re doing bad and when you’re doing good. All I have to say is keep saying my name, and say it often maybe it might help raise awareness for the cause. I’m very observant to personalities and I will treat you exactly how you treat me. This experience has changed me. I’ve learned to love what loves me and stay focused on keeping my peace. PEACE is everything to me. I’ve learned to truly to HUMBLE myself. I was so cocky in the beginning. Thinking that I didn’t need help but I did. I thought I could figure everything out on my own. It’s okay to ask for help. It’s okay to receive help. Just make sure that it’s good help and that it will actually help. Happy Reading!
This is a poem that I wrote full of feelings and emotions about my most recent experience. I’m sure as you read it, you will experience some of my same emotions mentally. This piece can be found in my 2nd book which is a sequel to my first. It will be called “A Piece of Me II: Still Standing”… coming soon! Enjoy!
These past few weeks I’ve been going through it. Still struggling with this complex ass illness. What happened? I was doing so well. And out of nowhere I woke up in hell.
I’m not certain what went wrong because at one point my mental was so strong. Then a flare sneaks up and attacks my immune system. Foreign invaders and I still can’t resist them
I fell unconscious and needed an ambulance, then I finally woke up to complete bulshit. It’s like damn wtf can sometimes I get a break, one thing at a time this is so much to intake. This time was different because it was so scary to me, I started thinking like damn death is quickly approaching me. I’ve never experienced something so seriously, it’s been hard times but nothing as fatally.
I started feeling something tingling, on the right side of my body, it was so unreal to me. My right arm and leg loss all feeling. Stroke symptoms present really? How could this be? But that’s not the worse, I lost my memory, not only that I also lost my speech. How can you lose your memory and your speech? Makes absolutely no fucking sense to me.
Lupus can you please let me fucking breathe? It’s been 23 years and you continue attacking me. Needles, medications, diagnosis and guessing when will this end or stop creating the stressing? The doctors always say her situation is so complex, Yeah really? You think I didn’t already know that?
They had me in diapers and I’m only 32 years old, couldn’t urine on my own cause I had no control. How embarrassing is that, humiliating at most, when does this end, how far will it go. But let me tell ya’ll folks what really hurt the most, I didn’t know my son, my only child was a ghost. It’s a crazy situation not to know your own kid. The one you gave birth to and cared for all these years.
They said brain inflammation, she’s mentally unstable. But I feel like I’m becoming fucking disabled. This time around I really thought I’d die, but my son kept me hopeful and fighting for my life. I appreciate the support and all the love given and I can’t wait until I experience that remission.
Until that day come I’ll keep venting through my writing. It’s a mental thing for me, another way of me fighting. Most don’t understand why I stay vocal about this. But I think you’d understood if you lived with it. It’s a release for me, a venting process, the only real escape that helps me get rid of stress.
Doctors say this situation may happen again, damn hearing that makes me feel I won’t win. This is a big challenge and I know I won’t give up but needless to say this illness is still tough. I finally was released and it’s such a great feeling, currently at home accepting this new healing. I know better days will eventually come my way and eventually relieve me from this disability.
"Humble Yourselves, or life will do it for you!"
"Remain Humble. You can fall off anyday."
Life. What is it? What's the purpose? I'm sitting here full of thoughts, emotions and confusion. I just finished watching the movie "Precious" and I know, I know it's just a movie but it's also real life to someone else. So I sit here like damn Toya. You just have some painful ass illness that controls your life, moods, health, actions, thoughts, mental and safety. Why do you complain? Why even mention what you go through? No one cares. No one pays attention. You're not helping anyone. You're drawing attention and people are thinking you are an attention seeker.
This entire experience while I'm finding myself, or at least trying to, I try to focus on the things that get me through the day. I may not be getting beat, raped, tortured, homeless, hungry, armless, deaf, blind, etc but truth be told all problems are problems. None are less than the others when it comes to someone's life. We All have different levels of hardship and they ALL need to be tended to. Isn't that how we mold a better world for us to live in? We all need to be heard and that's all I want.
I don't know exactly who I am and I may be still trying to find her. but I do know that I want to be heard. I want people to know my struggle because maybe, just maybe it may help theirs. People reach out to me all the time telling me to keep fighting, and that I am their inspiration. Truth be told though, I'm no fighter. I'm just out here surviving the best way that I know how. About a week ago a family member of mine asked me what makes me happy? It's rare that people ask me about my feelings, or thoughts. I'm usually given advice or told how to live better, eat better, cure my lupus, etc. My response was "Helping others. Seeing people smile and succeeding. Writing. Jalen. Being around family. Creative stuff like painting. Sentimental things. Words from the heart. All of this makes me happy and keeps me going. And most importantly PEACE."
This is my truth. I know it's more difficult for me to live like other people because of my health sometimes in regards to certain activities, scenery's and thing, so sometimes I live vicariously through them because I feel like, if they are winning then of course I'm winning too. For example, if one of them has a baby, I'm like yay we had a baby because I know I can't and if I ever can again then it will be a miracle like my first child was. If they're people that I love, then we win together through each other's accomplishments. Unfortunately life doesn't work that way. You can't expect people to love like you, give like you, think like you, care like you. And this is one of the reasons why I always feel as though I don't belong here. This world thrives off money, business, trends, looks material, popularity, opinion, etc. I'm not that person. I'm not her. Everyone wants to be like the next person. I don't. I don't care to fit in. As I stated before, I just want to be heard and of course respected.
After this recent experience of mine, I've realized that my lifestyle needs to change. I need to stop surviving and start living. Living the life that I'm supposed to live. Being happy, healthy and free.
Wow! July 2018! Where do I began? I just looked at my archives and realized that I didn't post a blog, the entire 2017 year. My life could not have been that busy! Or was it? Well let's do a recap. Prepare for this journey as I recap my story. This won't be such a short read but you'll understand why, from writing I took a short leave. Let's start.
My last post was November 2016 and I shared a poem with you all in regards to the pain I was in. But what I didn't do is explain that the pain wasn't only from my lupus nor only externally. It was internally, mentally, and emotionally. I was broken and I didn't know how to be fixed. I had been involved in a bad relationship with a bad person and I had dealt with so many bad dealings during that year because I naively decided to allow this not so great person to be in my space. It caused me more stress and complications to my illness. I was overwhelmed, pressured, hurt, stuck, foolish but overall careless because I felt defeated and didn't want to continue to fight.
The funny thing about it through is that I kept this part of the destruction in my life a secret and managed to accomplish some great things. I graduated University of La Verne with my Bachelor's degree and this was huge. Very huge for me. As I young adult I was told that I wouldn't make it, and that my life was ruined because I had a child at 20 years old before marriage and finishing college. That had always stuck with me. So I was determined to prove them wrong no matter how long it took. I have a funny way of holding in things and shocking the crowd. Giving them a version of me that they never expected.
So fast forward, today here I am, t job promotion, three degrees (Two Associates, One Bachelors), working on my Masters, working full time, a mom, soon to be wife, one published book, two pending published books, with a deadly complicated ass illness. I'm maintaining a living, a life and survival. So I could give two shits what a person thinks because guess what, I'm doing it. Me! And the shit IS NOT, I repeat IS NOT easy.
So let's continue to the focus of this post. I stopped focusing on my passion which was writing and spreading awareness. I got cocky with my progress and just no no longer had the motivation to finish my books which were already over 50% complete. I guess you could say I took a break. I was just living my life. What did I do during that break though? I fell in love. It stopped my world and my routine. I got lost within us and just accepted my new journey. I stopped focusing on me and focused on what was there. It felt good, I felt great, and I was so very happy. There wasn't one thing that could steal that from me. I thrived in it, stopped keeping in touch with a lot of people. That love became my life and was the only thing that mattered at the time. HUGE PROBLEM. I lost myself and forgot that during the process of loving what was going on in my life, I still needed to love me. So from January 2017 to November 2017, my world was beautiful or at least I thought.
In November 2017 I was found unconscious on the floor. I was told that prior to that I thought my kitchen was the restroom and I tried to use it. I was rushed to the hospital in an ambulance and was placed in a medically induced coma while under sedation. A tube was placed down my throat due to an insufficient amount of oxygen being received. Imagine how I felt once I woke up? Restrained, pain in throat, not knowing where the hell I was or who the people were around me, sedated, in pain, confused, catheter, etc. My first thought was get me the hell out of here. Then, I thought someone was trying to kill me until a nurse approached me asking questions. I just stared. Observed my surroundings until I saw familiar things. Nothing was familiar though. The Nurse explained that I was at the hospital in ICU. I felt like I was in the psych ward because they had me tied to a bed and it didn't look like a typical hospital room. I remember my sister approaching me asking me if I knew who she was, who I was, where I was, etc. I didn't. So I laid there, angry, confused and wanting to break free. I was told that many family members were there but I don't remember, all that I am able to say at this point is that I appreciate you for the support. I remember a select few after I was finally alert and slightly stable. My apologies to that hospital staff because I was not a friendly patient. I cursed, threatened, screamed, etc. I remember my friend apologizing on my behalf and telling them I wasn't a mean person and to forgive my behavior. The next day or two I was transferred to my home hospital, treated for about 1-2 weeks and discharged back home. I remember my discharge diagnosis said something like confused, or mentally impaired. When I was sent home so much drama occurred. I won't go into those details but I will say I was cocky. I didn't think I needed anyone or any help. I refused it all. My mom flew out here to help care for me and I wasn't appreciative because I thought I was super woman. I could do it all. I didn't need help. I kept telling everyone I always bounce back. This can't stop me. I went right back to work in less than 4 weeks and I was ready. Ready to take over. I didn't need family of friends, or did I?
"Arrogance is an unhealthy ego in need of repair." ~Thomas Faranda
TO BE CONTINUED...
So I haven't written on here in a while and I apologize for the delays... My life has been up and down and a whirlwind of crazy but the past few weeks have been great!
That's how it works though. Things will be going just fine and lupus will come and fuck it up! Thanks lupus!
I'm feeling pretty great today but last night I was in so much pain, I was pissed. I'm sick of feeling like, every time lupus wants to act up, that I have to pop a pill or some type of narcotics.
I'm sick of letting this bitch have any type of power in my life. When I usually get this upset, I have to vent. I have to tell the world or whoever decides to listen, how I feel and I usually do that through poetry. If you have an issue with curse words or a release of anger then do yourself a favor and don't read it. This poem will be available in A Piece of Me II along with some others. Be on the look out!
This Bitch named Lupus
So let me tell y’all about this bitch that I know,
Her named is lupus and she started harassing me a while ago.
I met her when I was a little girl,
She creeped into my life and fucked up my entire world.
I used to try and picture my life without her,
But there’s something about me that she won’t let go.
She’s worse than a venomous snake bite
And she always attacks like a thief in the night.
With her around, things never go my way,
She always manages to fuck up my day.
She’s always in the way like a sneaky ass snake.
She’s a clingy ass bitch that I just can’t take.
Every day I wish that she would just go away
But she returns for more like a lost ass stray.
She causes struggle, pain and so much heartache
I wish she this was a glass that I could break.
I be fighting this bitch every single day,
She still can’t seem to stay out of my way.
She never gives me a warning when she’s ready to attack
Something’s got to give because this shit is whack!
I’m venting because I’m mad and really angry too!
I wish that this bitch would find something else to do!
I’m annoyed and frustrated and ready to explode.
The things I want to do to her you don’t even know.
I wish that people could understand what I really deal with
So that they could help me get rid of this annoying little bitch.
Is she that damn jealous that she tries to steal my life?
It’s cool because I’ll just continue on with my fight.
In the meantime, let me tell y’all a little something.
Please educate yourselves because this bitch may go hunting.
For those who already seemed to know her,
Don’t worry warriors we’ll find a cure.
For those who haven’t met her and just don’t seem to care
Please be careful because she is no longer rare
She’ll attack you and your family too
So I’ll keep raising awareness so that you know what to do.
I’ve never hated anything as much as I hate this bitch,
To get rid of her I’d accept never being rich.
She’s cruel, cold, deadly and not nice,
She’s always trying to ruin my body out of spite
After 21 years I still haven’t given up
It’s super hard though because this bitch really sucks
After all of this time, you’d think she’d finally quit
But I guess she attacks the strongest, she’s such a silly witch.
My message to her and her torturous ass tricks
I’m still alive and you won’t win, you stupid bitch.
I’m just sitting here reflecting on my journey in life and how far I’ve come. It’s been a scary but also a rewarding experience for me. I remember when I was a little girl, I used to think, I can’t wait until l’m older. Now that I’ve grown up, I only enjoy getting wiser, not older. Come Tuesday I will be the mother to a ten year old. That’s an age that I never thought I’d make it to witness. When my son was born I remembered being so scared and thinking what the hell did I get myself into. It wasn’t the typical experience either. Here I am 20 years old, afraid to tell my parents, and feeling alone, embarrassed and ashamed that I had gotten pregnant in college not too long after I lost my virginity. At the time, I wasn’t even taking care of myself or receiving any type of prenatal care. The best thing I could do was hide my pregnancy.
It was easy because I was small and barely showing and my boyfriend at the time made it clear that he wanted no parts of a public pregnancy. So I did what I thought was best after attempting to have an abortion at his requests. When Planned Parenthood informed me that I was much too far along, I knew at that moment that I’d be a mother for the rest of my life. Since I was sick all the time, I ended up getting kicked out of school for missing too much class and receiving bad grades. There goes my Bachelor’s, I thought. During this time we had to figure out a plan so that neither of us would be embarrassed about the situation that we had gotten into. He was the almighty football player attending the local community college. And I was just another dropout statistic at a college known for its partying. So I’m a second year student thinking how the hell I could be so stupid. Although I was no teenager and a consenting adult at the time, I was so naïve and vulnerable to men. I still hadn’t gotten over being betrayed by a boy that I had lost my virginity to just a year prior. Now, I was in a relationship with someone that didn’t even want me. But there was no use in crying over spoiled milk because the damage was already done. I was going to be a mom and that was just the truth of it all.
After feeling alone, depressed and unwanted, I decided to tell my mother. Fortunately she was very supportive and opened to the situation. She offered me a place to stay and as much support as she could give me. The only problem was that she lived across the country. I decided to speak with my partner about it and he agreed that it was a good idea. Since he was from the same State, the plan was to continue his football career there and get a job to support his new little family. The only issue was, when the time had finally come, I ended up traveling alone at 5 months pregnant with promises from him of following behind me within a month. Only a selected people were aware of my situation and they supported me to the best of their ability during that time.
About a month later, I started having contractions. I’m so nervous because I’m more than 3 months away from my due date. So I go to the ER and discover that I have preeclampsia which they called Toxemia at the time and also I have HELLP. The doctor tells me that since my condition is so intense, I’d have to remain in the hospital until the baby was born. I was very upset because I hated hospitals and definitely didn’t want to lay in one for 3 months with an uncomfortable catheter inside of me. They were determined to have me on bed rest until he was born. He also told me that there was a chance that my son was not going to make it since I was only 26 weeks and they had to focus primarily on my health. My son had other plans though because he arrived three days after I was admitted. I had to have an emergency C-section and since I was drugged up on magnesium sulfate to prevent me from having seizures and some other things, it made my vision blurry, so I was semi-blind at the time of his birth. My mother was the only person by my side during his birth and she told me that they took my uterus out and placed it on the table while my son peed on me. He was born on a Wednesday weighing one pound and six ounces only at 12 inches long.
During my stay, I developed MRSA and post partum depression. Here I was, a new mom at the age of 20 with little or no support. My mom had called my boyfriend at the time and explained to him all of the events that had taken place since I wasn’t able to. He said he’d get there asap and she offered to help him. I spoke to him for a short period of time and he seemed slightly concerned but at the time, I don’t know if it had been for me or our son. I explained to him that the birth certificate needed to be signed before the end of the month and we finally confirmed a name. I wanted Amir Mekhi to be his name and to my knowledge he wanted Jaylen. Later I discovered he actually said Jaden but I guess I was too drugged to fully comprehend.
As a little girl, I always knew that things would be done, in my eyes as the correct way. This is what my father had always taught me, which is why I never told him that I was pregnant. He found out after my son was born that I was no longer a virgin. Initially, I was going to get a boyfriend, finish college, get married, then have baby. I believe that since I was so naive and wounded, my brain chose a different route. I also didn’t have the best relationship with my father and there was no other man out there to teach me how to choose a good man. My father was so authoritative and just always told me what not to do but he never told me why.
I never knew in a million years that I’d become a single mother. That just wasn’t me. I was a good girl, with a good heart. Maybe a little naive but I treated people with respect and showed lots of loyalty. I never could understand how someone who called themselves a man could just up and leave their child. This baby was half of him, a part of him. But that is how my journey began. When I was finally coherent, I decided to call him. It had already been a couple of days since the birth of our son and he was nowhere to be found. I called him up and to my surprise the number was disconnected. I freaked out. I cried for about three days straight, declining visits and phones calls. It just wasn’t real to me. I was a new mother with no clue on what the next step were. And I was alone. It was the worse feeling ever. I also had no bond with my child and didn’t really want one at the time either. This was the beginning of my baby blues session.
My heart and spirit was broken into pieces. I’m usually prepared but I wasn’t. How could I allow this to happen? I was a good girl who was deserted. I was wholesome girl who was abandoned with a baby. I had no job, no car, and no money. So I tried to call him again. I should have ended at the first try. He had changed his phone number and I had been officially erased. Wtf was I supposed to do now besides cry? One day a nurse came into my room with a wheelchair. And she said come on honey; it’s time to see the baby. I had no interest in seeing him. I was too depressed and emotional. But somehow she convinced me to take a trip to the NICU. After an array of procedures that I had to follow they finally placed Ja’len in my arms. There was this little life in my arms fighting to stay alive and here I was giving up. He had to be removed from me immediately because I started to vomit. So they rushed me back down to my room and gave me Phernergan (promethazine) to help settle my stomach. This was a huge mistake. My head immediately started pounding and I vomited continuously even more, while having mild seizures. I couldn’t breathe and my blood pressure went sky rocket.
Immediately I was taken to the Intensive Care Unit. After a several days there, I finally was stable again. I began to reflect on everything that I had gone through. Then I thought about it and I asked myself who would be responsible for Ja’len if something had happened to me? His father had disappeared and Ja’len was in the hospital fighting just as much as I was. I knew I had to get myself together. So I began to fight too. I was determined to rescue that little boy who never asked to be here in the first place. Even if I had to do it alone, I would not give up. After about two weeks, I was finally able to go home but there was one issue! I wasn’t allowed to take my baby with me. I was devastated. It was one of the hardest moments during my experience. He wasn’t even two pounds yet and they had to continue nursing him to good health.
After being told that he would be released close to his due date, I was sad. My due date was November 8th and we were still in the month of August. Not only did most of my friends and family discover that I had been carrying a child for the last 26 weeks (yes my secret was out) but everyone wanted to know where he was when I got released. And over and over I had to give the story of him not being able to come home until he was eating on his own and breathing on his own. He was surviving on a ventilator and also a feeding tube. During that time, he made some miraculous improvements and ended up coming home mid-October weighing 4 pounds and 5 ounces. It was definitely a progression. I was elated to start this journey with him. Although he had to be on an apnea monitor, which often scared the shit out of me, he was breathing on his own and eating on his own.
Funny thing happened though, the exact day that he was released, I received a private call from his sperm donor. I’m not sure if he had been calling the hospital checking his status or what. The first thing he asked me was who I had been seeing during the time we hadn’t spoken. I wanted to curse him out so bad for putting me through all of the things that he had put me through and then had the nerve to inquire about my dating life but a part of me was relieved to hear from him. So I simply told him that our son had just been released from the hospital and to refrain from calling me unless it was in regards to our child. Our son was two months, I didn’t hear from him again until he was nine months old. When he finally called me again, from a private number, his last words to me, while I remained silent on the phone were, “I’m sorry for doing this to you. I’m not ready to be a father. But I promise that, as soon as I get on my feet and Ja’len is older, I will make it up to the both of you.”
Here we are ten years later and I still haven’t heard a word from him. I guess he never got on his feet. But I’m not upset, angry or bitter anymore. Ja’len is a beautiful kid. I actually feel sorry for the dude because not only did he miss out and will continue to miss out. He has to live with the shame and guilt for the rest of his life. I’m sure he’s had his fair share of karma on behalf of my abandonment but I wish him nothing but the best. He gave me something that no one could. He gave me something in a time where I needed it the most. He gave me Ja’len.
Ja’len has changed my life for the better and I’ve become a much better person since I’ve become a mother. There’s no greater feeling in the world than waking up to a happy, vibrant, loving, kind, fun, and handsome boy.
I’m sorry that his donor was a coward. I’m sorry that no one taught him to love, protect and fight for his family. I’m sorry that he chose what appeared to be the easy way out. I’m sorry that he doesn’t have the same strength as my son and me. I’m sorry he’s in an adult body but still a boy. But I’m not sorry for becoming a mom and fighting through every road block. They say women can’t raise a man, and maybe there’s some truth to that. But one thing that I will tell you is that my son will be a man. He will take care of his responsibilities and he will love and respect people, even if it takes the last breathe inside of my body. I will make sure of it.
My main reason for sharing this is not only because my son is turning ten next week but also to share my journey with him to show how far I’ve made it. We’ve come a long way and I finally obtained that Bachelor’s Degree. We’re doing well for ourselves. I have my own place, my own car and Ja’len is well taken care of. So to everyone who said that I would fail, look at me now, succeeding and shit. This experience has taught me that ever circumstance isn’t permanent and every downfall doesn’t mean it’s over. I’ve definitely had help along the way and I just want to thank any of you, who has been there for me.
Shout out to the men who played a role in his life. I’ll use nicknames because I’m not sure they want to be called out publicly. Junebug, thanks for showing me what real love feels like. That was one of the roughest periods in my life and you were there for me through it all even though it was for such a short period. It sucked that you had to leave us but everything happens for a reason but I’ll always love you for being a real man, treating me like a Queen always, and loving my son.
DFree thanks for showing me everything that I wanted in a husband for me and a father for my son. I’ve never met a father as amazing as you. I never watched a man love his child so much before. It felt good to know that still exists. And to be there for the short period that you were helped contribute to my son’s great characteristics. You always spoiled me emotionally and loved me unconditionally.
To my future husband, I hope that you are more than half as exceptional as these amazing men have been. Although I’ve had my fair share of broken souls, I will accept nothing less than the greatness that I have already experienced. I know what real men are capable of and these men have definitely shown it. They’ve accepted not only my son as their own but also me and all of my flaws. These are the only men that I’ve been able to be 100% myself around with no judgment. I pray that God sends you to me fully prepared and ready to build a great future. I trust that you will do the right thing and always protect me, love me and handle your responsibilities. Never Give up is what Ja’len and I follow by and we plan to follow your lead.
Last but not least, to my son’s father Spanky. Not only have you been there since Ja’len was in diapers, during hospital stays and doctor’s visits. You have dealt with bullshit from people criticizing you for being in his life since he wasn’t yours biologically. You never allowed that to stop you from claiming him as your child. I love and appreciate you and your family forever. You and I have definitely had our ups and downs and even after we broke up and separated, you still made sure you were dedicated to your relationship with him and you didn’t have to continue on with it but you did. I’m happy we’re finally building the friendship that we once had back up and I am forever grateful for you staying in his life! All he knows is you! Thank you, thank you, and thank you.
With all of this being said, I will be celebrating ten years of my Prince’s life on Tuesday, August 9th. HAPPY BIRTHDAY Ja’len Amir Mekhi Terry! Mommy loves you. Thanks to everyone who contributed to his development in life.
I feel as though I’m being ripped into pieces.
Every inch of my body is becoming defeated.
I feel like I’m a piece in a garage sale.
Getting tossed out like unwanted mail.
One minute I’m good then the next I’m bad.
I dream about the painless life that I once had.
Diagnose her with this, and then tell her she has that
How about find me a cure so I don’t feel like a doormat.
I feel like I’m being ripped into pieces,
I get so disgusted as if I’m covered in feces.
Sometimes it’s seems so hard to deal,
with an illness that not everyone considers to be real.
I’m pained, I’m tired and my brain is consumed with a billion thoughts.
You’d think I’d be used to it, after these years that’s I’ve fought.
Here takes a piece, everyone gets a share.
Let her partake with the virus in the air.
I feel like I’m being ripped into pieces,
I’m learning a lot about what this illness teaches.
She doesn’t matter, feed her to the cows.
Forget about the search party that’s occurring all over town.
Let’s beat her up, let’s make her suffer,
Let’s show her that chronic illness is tougher.
She doesn’t deserve a piece of mine,
Look from the outside, she looks just fine.
I feel like I’m being ripped into pieces,
As if I’m being stepped on like the seaweed at dirty beaches.
Will it ever end or will it ever stop.
I put up a daily fight; I give all I’ve got.
My body is attack on a daily basis.
They don’t understand these challenges I’m facing.
I’m some old food, left in the fridge and meant to rot.
Or a jump rope tied into a mysterious knot.
I feel like I’m being ripped into pieces,
can’t wait until this illness eventually ceases.
I do believe that a cure will come soon,
But maybe not until I’m dead and shining though the moon.
One day, somehow my wish will come true
And that time will be when I no longer deal with you.
This is my last chance and opportunity to live life.
Lupus will never win without me putting up a fight.
Remember you will not always win.
Some days, the most resourceful individual will taste defeat.
But there is, in this case, always tomorrow -
after you have done your best to achieve success today. - Maxwell Maltz
So I haven’t written a blog in awhile and I decided to attempt to get back in the groove. I have these crazy ass mood swings where I’m up and down. Sometimes I’m excited and so motivated and other times I’m like forget this shit.
That is what lupus does to me. It steals my joy and dedication and then leads me down the road of giving up. Health wise I’ve been struggling trying to stay afloat and stay alive. I feel like every other second I’m wearing boxing gloves and continuously getting my ass kicked. It’s tough because I haven’t been a good fighter lately. I haven’t been defeated either.
Hopefully this time off of work that I’m expecting soon will lend me a helping hand in my healing process! Right now lupus really doesn’t like me and I’ve never liked lupus.
Back to reality now! Enjoy your day!
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.
Keep in mind that the book hasn't been sent to an editor yet...
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.