(Please see previous July 2018 blog posts to discover how I got to this point)

ROUND I
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.

ROUND II
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?

ROUND III
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.

​ROUND IV

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!
 
ROUND V
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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!
 
My Disabilty

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?
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"Arrogance is an unhealthy ego in need of repair." ~Thomas Faranda
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​TO BE CONTINUED...