(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
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.
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